In the midst of all the pain, suffering, hospitalisations, day surgeries, hot water bottles, jars and jars of pills, nasal sprays, Consultant visits and endless, fruitrless visits to the doctor.. and more painkillers, there doesn't seem to be much room or time for the Partner of the Endometriosis Sufferer. This technically isn't true...
I know I'm not forgotten, I know I'm wanted, I know all this, but it does not help me when I see my partner in absolute agony, bent double, sobbing. I know I can't feel the pain, well not the same pain anyway, but it does hurt.. deep, deep inside.
I wish that there was a miracle cure, I wish I could buy it.. but there doesn't seem to be. I have trawled the Web for info for the past 14 years now and I have yet to find a website or group that helps the Partners through it all.
What is much, much worse than this, is to sit in a Consulting Room with my partner and listen to a 'Consultant' tell my us that following the last op, they can't find anything.. or very little anyway. Do they know what they are looking for? Do they really understand that when my partner is telling them that she is bent over in terrible pain, she is just being polite.. she's in absolute, undivided agony for more days in the month than he has had hot dinners.
I would give up my hind teeth (and much more) to swap places with the consultant for a month. I could sit in the consulting room and listen to the sufferers everyday.. prescribe them really strong painkillers while they waited for a 'little' while (a day or two) for the op and then laser their endo with a vengeance... until it was all gone.. whatever the expense.. Meanwhile he could tend to my Wife.. see her in agony and feel as helpless as I do. That would be a good trade.. and when we returned back to our normal duties, he might understand a little better and start treating women with Endo seriously and effectively.
There is no excuse for not understanding about Endo.. at least a little anyway. The Web is a fantastic resource for this purpose. So why are people, particularly the medical profession, (I speak in general terms here as I do know that there are exceptions to this rule) in the UK so ignorant to this crippling disease, or am I confused by what I see.
So, now I have that off my chest, and believe me, there's plenty more where that came from..
Thanks for listening.
Below are the messages from Partners that have been sent to me over the years. Please feel free to read them.
My daughter (18) told me earlier this week that the female health nurse at her college suggested she see her GP to talk about endo. As a single parent I knew I would have to talk about the 'girl things and changes as she approached the age, thankfully this was covered at school, although we did chat after that, thankfully on my part.
I never understood and neither did she, that although period pains can be bad, we never knew about endo, the past couple of years I got annoyed when she would stay in bed, or curled up on the sofa, she has been to the GP on numerous occasions complaining of a painful back, which she had put down to her dancing, I put the tiredness down to not going to sleep earlier, now looking back, she was going to bed early, and sleeping longer; she had told the doctor about the painful periods, and was given medication to try and relieve the pain.
As most single dads will tell you talking to daughters about female health is difficult enough, perhaps I could have done more, who knows? Talking to our sons is easier because we have been through the growing stages they face and have a better understanding of them.
So to my daughter Heather, I just want to say I will be with you every step of the way on this, and be more understanding of what you are going through. You know I love you, if I could take this away from you I would, just to let you know I will always be here for you.
Love you, Dad xAlex
I'm so proud of you for being so strong and brave over the last 2 years. I can't begin to imagine how hard it has been for you and how much pain you've been in, and yet you've managed to put a brave face on it all and keep smiling. I don't know of everyone else that would of been able to handle themselves like you have,
You really are an amazing person, I'm so lucky to have you in my life and I can't wait to have a family with you. I will always be there for you.
Love you Always,Stephen
Our daughter Joanne has had this horrible thing for a while now. This week we have received the news that has cut us all to the bone, it looks like her womb will have to be removed. Moff, her husband is coping admirably but what he is thinking...we don't know. Her mother and me just don't know what to do, what can we do? I, as her Dad would gladly cut off my right arm if I could stop this happening to her but at the end of the day the sentiment means absolutely nothing.
We've bought her some Lycopene capsules to see if they might work and try to give her some sort of relief from the pain and/or reduce any further onset of the disease. We will let you all know if they give her any comfort. Can any of you poor people let us know how we can help our daughter and her family through this?
Your help/advice will be much appreciated, Jackie and Trevor.Trevor & Jackie
I just wanted to say WOW! What a fabulous resource and support site.
I am a Reflexologist and I do treat clients who suffer to differing degrees with Endo and PCOS.
I just really wanted to say how much I have seen stress and other lifestyle factors affecting the cycles of endo pain, more than anything else. Before I treated women with this horrific condition I really had no idea how much stress could affect us! It really does seem that stress is very much linked to endo pain.
Whatever you can do to rest, relax and reduce stress in your lives then the more beneficial it seems to be to endo pain.
Warmest wishes,Claire Park
Just come across your site whilst trying to research endo, and having read lots of stories and the heartache people are going through just makes so many thing so so so clear.
I have been married to my wife Dee for nearly 12 years, and Dee started with the crippling pains not long after that.
After 4 failed attempts, we finally had a son 10 yrs ago, and after this things went downhill very rapid.
Loads of things were running through my mind is she faking it cause she doesn't love me anymore ? What have I done that was so so wrong.
After years and years of being fobbed off by the doctors Dee was diagnosed with a different health condition, this was some 3-4 years ago, and the pains etc were put down to this.
After repeated hospital in-patient visits and test and scans and all the poking and prodding, and all the fobbing off and years upon years of very strong medication we saw Dee's Gynae today and after yet another exam ( my heart goes out to all the girls who have to go through these exams ) he has said Dee is suffering with endo, and has booked a operation in 6 weeks time.
Endo is such a horrible condition, it put's so much strain on a relationship, both Dee and I have had another real good talk tonight probably the hundredth over the years and both agree that if we didn't love each other as much as we do, we would never have survived.
Dee is my world my soul mate and I hate to see her in so much pain, it kills me inside and tears me apart wishing I could just wave a magic wand and take it all away.
I attend every appt she has and when she is in hospital I visit twice a day, try to make sure life goes on around this horrible thing, trying to make things a little easier.
But most of all the reason I do these things is because I love my wife with all my heart, and could never live without her, even with all the pain and the mood swings and the shouting, cause deep down I know the Dee I fell in love with is still there fighting to get out.
Another thing that I have noticed on this site is there is no mention of how things affect the children, we are lucky we have a great son, he has grown up seeing his mum in this pain and just trying his best to help, so a very big thank you to our little diggle.
Just hoping that things will get better in a few weeks, but looking at the stories on here it may just get worse.
Chins up guys, yeah it's hard and frustrating but the girls are worth it.Eddie Gorman
I just wanted to respond to Jim's message re his 'two Heidi's'..
I sobbed reading it! It really struck a chord as it could have been my own husband writing that. You literally summed everything up in a couple of paragraphs. It's not just us girlies that suffer with endo, our wonderful husbands, boyfriends, partners are there beside us suffering, watching us suffer & we are very lucky indeed to have them.
I was diagnosed with endo at 19, met Stephen at 20. After trying every pill on the market, pain clinics, passed from specialist to specialist, injection after injection and 7 operations later..it has this week been decided that a hysterectomy is the way to go. At 28, we're finding this all rather daunting.
I was told at 19 I'd never be able to have children as the endo was that bad..so when I fell pregnant at 21, I was determined to go ahead with the pregnancy. We had only been together for a year, but Stephen (although terrified at the prospect of being a Dad at such a young age) fully supported me. We cancelled our flights, as we were due to travel around India, & got our heads around this new pending adventure. Amazingly, two years after the birth of our son, we fell pregnant again. The doctors couldn't believe it! (nor could we!) We are incredibly lucky to have been able to have children. If we had waited until now, it just wouldn't be an option.
We got married 3 weeks ago (I know! exciting huh?!) I truly couldn't have gotten through the past 9 years without Stephen. Every scan, appointment, test result, operation..he's been there. Don't get me wrong, it's not all been rosey. There's been times when he's screamed at me through sheer frustration as he's powerless to help when I'm curled up in a ball sobbing in pain, unable to move...what he doesn't realise is that just by being here - laughing at me on my ridiculous irrational hormonal days, hugging me on the tearful days, listening to me on my ranting days, holding my hand on the painful days - he is helping.
After reading Jim's message, I literally ran down the stairs in floods of tears (actually hobbled, as it's a pain day today!) and gave him the biggest ever squidge. Looking all a bit bewildered, standing amongst bags of shopping waiting to be put away on the kitchen floor, he asked whilst wiping the tears from my face 'what's this for?' 'Just to say thank you, thank you for everything. It was just something Jim said that got me thinking..I love you so much'. 'You're very welcome pickle' he said, looking even more confused..'but who on earth is Jim and why's he making you cry?!'Victoria
It's been four years.
Four long years of doctors telling us there is nothing they can do nothing that will stop the spread of this vile insidious Disease that is totally destroying our lives.
Four years of biting my tongue soldiering on and keeping a stiff upper lip.
I just want this nightmare to be over a normal life one that doesn't involve me rushing home from a not very understanding boss who doesn't give a s***!
No more hot water bottles, tramadol or Zoladex
No more waiting for that next consultant appointment were they are going to say "lose weight there is nothing we can do"
I love my wife with all the passion in the world she is the most wonderful and precious thing I have ever seen. I just want her to be well I want someone to understand what it is to live with someone with class 5 endometriosis to see the day to day lives that we have had forced upon us.
I want to scream at them to do something other than sit behind desk and tell us there is nothing they can do.
I can't go on like this for much longer I need help.
I have no friends my family are miles away and sometimes I feel so alone it's never hit until this moment just how alone I am.
Please help me. someone please help me.Andrew
I'm not a partner I'm a sufferer but I just want to say thanks so much to my boyfriend jack!
We have been together over four years and I've always been in pain but I've only just been diagnosed with endometriosis and after the laparoscopy and treatment things are so much worse. he is so supportive and comes to hospital with me and takes all the moaning I give him when I just get completely fed up or moody.
I couldn't ask for anyone more amazing, thanks xTanya
I've decided to send in my message of support dedicated to my Princess!
We met around 10 months ago and she is an absolutely amazing person.
We don't see each other all the time and therefore it was quite some time before I was with her when she had her period. At this point she told me about her endometriosis. I didn't really appreciate what it was to be honest but I have told her how brave she is not only to cope with it but to tell me that she suffers from it.
I researched the internet and as usual the whole subject has raised loads and loads of questions in my mind and regardless of the nature of them she has answered them all.
We speak about it quite a lot now and I'm not frightened of it, I know I'm not the sufferer but I'm sure there are a million men out there who would run a mile or ignore the fact. I'm doing neither of these things and I never will.
I know it's so difficult for her to deal with, I know how difficult it is to talk about it and I know it's kept a secret from everyone. I can't believe how lucky I am to have met such a wonderful person and I'm never going to let her down.
I want to be with her forever and being here for her and supporting her is my way of repaying her for the bravery she showed plucking up the courage to tell me.
I wish I could do more to support her I really do. At times I feel helpless but those are the times when we're not together. when we are together she lets me give her big cuddles and even hold her tummy when it's sore. I want to do these things forever.
It's important to us both to be totally open and honest with each other and what I have written comes straight from my head and my heart.
For her sake I just hope it doesn't get any worse, she doesn't deserve it. That's my only fear but I will face up to it with her.
Finally, I just want her to know that I love her millions and millions and millions.
From her ...Random Old Guy
I know you think I can be a big pain but its hard coping with what I've got and I know it's even harder watching me suffer. I just want to thank you for being there when I do need you and hopefully this doctor can fix me.
I just want to say I love you very muchChristina
Hey I have not long found this site and reading all these messages has just made me cry ... I'm 18 years old and had endo for about five years now and my experience with endo has been horrific ... I've quite a few treatments but none have worked out for me yet :( its gets me so down and I know all our partners and families are there for us and it's our partners who seem to understand a lot more than anybody ever will but no matter how close you are, you can't help feeling so alone with this illness ..
My fiancé Jamie is absolutely amazing and I would not be able to manage without him; he is my rock and I love him so much. I respect and understand how hard it must be for him because of how he sees me most of the time and to be honest I'm a lot worse now than I used to be and what I'm putting him through must be awful because at the end of the day partners go through this with us; the only difference is we have the pain and side effects of all the painkillers and treatment but other than that it's pretty much the same they go through all the worry and strain of it all too..
Having Jamie makes me feel like everything is going to be ok as long as he is by my side that is all I need to get through life; he comes to all my scans and appointments at hospital, he is always there for me no matter what and I feel guilty a lot of the time because a normal couple of our age should be going out and having lots of fun but a lot of the time I'm too poorly to be able to do things so he won't go out with his friends and wants to stay in with me and look after me. It's so caring and nice of him but I feel sorry for him because I want him to have a life too. I love him with the whole of my heart, body and soul. I could not bear to think what I would do without him because he gets me through; its all smiling .... we are all so lucky to have our partners by our sides :)...
I just hope that one day I will be able to give Jamie a family of our own, he says he is not bothered if we can't have children as long as we're together and well, but deep down I know that if we were to have a family it would mean the world to him and me too ....
Well I hope that every ones dreams do come true one day good luck to you all xJodi
I would like to say a huge THANKYOU to my partner Brian. I have suffered for two and a half years, but only recently been diagnosed with endo. My partner has been there for me through thick and thin, he has been to appointments, scans and even blood tests with me ; that is besides the mood swings and temper tantrums and my very fed up days.
Our partners do suffer seeing the ones they love suffer so much and being on the end of our bad days.
I love you Brian you are a star, I thank you for all your love and support and hope one day my dream of having a baby with you does come true.
xxxx All my love,Debbie
I'm not writing on here for help, I'm not writing on here for support, I just want to tell someone how I'm feeling and 'let it all out'.
I have been with my totally amazing partner for nearly a year now and I before I had met her I honestly didn't know what love felt like. She has become not only my first love, but also my best friend and my soul mate.
However, recently a horrible, horrible thing is trying to get between us...
My partner finished her Prostrap injections in Nov/Dec and during those 6 months she had much reduced pain and reduced bleeding which we were both delighted with. Over the past few weeks she has become detached from myself, her family and her friends. I don't know for sure that it's the hormones returning to her body that are the problem (she didn't take HRT whilst on Prostrap ) but it seems that it could be the case.
Since she first told me about her Endo all I have wanted to do is try and understand the pain she goes through, so have searched on the internet for ways of helping her, and way of helping myself. I have attended the doctors with her and sat in on appointments when asked to and acted gracious when told I wasn't needed there. I have got the hot water bottle when she needed it and tried to keep out of her way when she hasn't needed me.
At night she lies in bed staring, nearly lifeless, at the wall, cold to my touch and silent. I ask her whats wrong and I'm greeted with either a reply of 'nothing' or, last night, something that made me cry inside, the words 'I feel inadequate'. Never have I heard her say anything like that. It upsets me writing them now, let alone hearing them lying in bed next to her. I try to give her all of the support in the world and try and let her know that I am trying to understand what it is she's going through and that I'm not your 'typical male'.
This is such a massive strain on the two of us and I feel that I'm the only one who has the strength to hold us together at the minute. If I was in a different mind set I could think that she has changed and no longer loves me, but I know that isn't the case. I just wish I could make her happy and wish that I could see that smile that I love much more often.
An emotionally drained, physically tired, but never giving up partner.Sheep in Wolves Clothing
Again, I'm not a partner, I'm a sufferer, but I wanted to put up a note to say how wonderful my partner has been. Tom and I are only 20 years old, but he's been so wonderful to me. We've been in a relationship since January ‘09, but he's been my best friend for so many years before, and nobody knows me better than him.
I understand that it must be hard to see me in pain, especially when it inconveniences holidays and some of the only weekends alone we get, but he really is an absolute angel. He even hates hospitals, and he was there at my side after I had my first lap, and he's promised that he'll always be there.
At my age, I felt like something like this could interfere with our relationship so much, especially when we've recently been told that we won't be able to have children together, but he's been so wonderful, researching other ways, other treatments. He never complains about my grumbles, he always cuddles me when I need it. Compared to what he does for me, I feel like there couldn't ever be enough I could do in return, but no matter how much pain I'm in, I couldn't ever be anything other than happy to see him at my side, where he always is :)
I love you Tom xxxxxxxxSammy
Oh my god!
I didn’t realise how bad endo was. I have been rowing with my partner for a whole year. I love my partner to bits, but we’re constantly rowing over her meds; she takes a lot more pain killers than prescribed and they’re really strong, I don’t want to name them, but is this what other peeps suffering do too?
She won't let me go to the doctor's with her, which makes me think she's on more meds that she doesn't want me to know about.
So glad I came on this site, I’m going try a lot harder than I have been.
We have two wonderful children and I’m really worried we’re going to lose her over the amount of medication she takes.Lee
I've just read your partners page and cried.
I'm a sufferer and its nice to know we have partners who care. I have Gerald, whom I love dearly and he is by my side always through my pain.
Thanks for your site. I feel such a relief in sharing and knowing I'm not alone.Heather
This may end up as a load of waffle but bear with me!
My wife, Heather, has been chatting on the endo websites for a short while and it is a great help to her.
I have been reading up, looking on the internet etc etc as I want to understand this disease to try and be a help to her. I dont think I am a lot of help most of the time but I try my best. We have only been maried for a few weeks and what should be the happiest times for us, are constantly overshadowed by her pain, her worry and the stress it places on us both. I was glad to read the other partners messages on the website cos it does seem like I am out on my own here sometimes. Dont get me wrong, I know the support and help is SO vital for Heather, but I need to talk too, I need to understand. Its so difficult to try to do anything useful when she is in great pain, or cant sleep or is so worried about everything.
I feel guilty that I cant help her. I know its not my fault but I feel that I SHOULD be able to do something?????
I love Heather more than anything, and I would do anything for her. Its horrible that I cant stop her hurting though. I cant afford a laparoscopy on the private health service so she has to wait for months. At least we managed to get her to see the gyno man initially that way though, so she has gained a few months on the waiting list! I know I can help sometimes but theres always the risk of trying to be too cossetting which makes her feel useless and unable to do anything. A fine line indeed!Anyway, waffling on here, I was only going to say that it was VERY good to see there are other partners out there who are struggling with similar feelings to those that I have! I wonder if there is a way that us partners could talk though? An email list or something? In my defence, I can usually write a lot more eloquently than here but its one of those days!!! So, excuse my waffle, thanks for putting something for partners and I will keep positive! I love my Heather, I will do all I can for her, always.Rob
Hi my name is Adi (Adriana).
I have just found this site and e-mailed Wendi.
Having read this page I was left totally numb by the scenarios given by all those wonderful, supportive, suffering hubbies... God bless them xxx.
My husband is so wonderful. he is always there for me when I am in pain, but no matter what he does it can never take my pain away. All his help and devotion eases my predicament, even though I feel like a lazy cow for lying on the sofa when I am alone and can't quite make it upstairs to bed... waiting for him to come home from work. Sometimes guilt forces me to try and get up and get on with life, but Mr Endo exerts his power and cripples by body with sharp stabbing pains from all directions... yes everywhere!
So to all you beautifully kind hearted husbands who feel guilty too because you can't take away our pain even though you want to more than anything in the world to....REMEMBER these things... firstly we love you too much to ever let you suffer our pain.. although the thought is tempting. Secondly, knowing that you truly don't mind looking after things while we are out of it (for however long it takes!) means the world of difference to our load of suffering and thirdly We could not get through it without you being there for us from morning, noon and nite, without a moments notice when the pain attacks.
From this very loved and grateful wife, to my gorgeous, kind and considerate husband Marc and father THANK YOU SO MUCH and I LOVE YOU. To all you other husbands, THANK YOU for being there for your wives.
God Bless and take careAdi
Sorry, I'm not a partner, I'm a bird with endo., but I just read your page, & it made me cry! I get so wrapped up in my problems, I forget my partner kevin is suffering too.
Thanx for the reminder lads.Louise
Hi there Paul. My girlfreind Tracy sent an email to Wendi.
I have been dealing with Tracy everyday and night while going to hospitals and doctors and consultants. We have a daugher who sees her mum ill doubled in pain every week or so. She has had 3 laps and they keep saying it will be okay.
Its not them who have to take time off work to look after our little one, or to look after Tracy.
Its not them who lose any sleep over it.
Its not them who have to give morphine to there other half to give her pain relief then it knocks her out.
Its 'great fun' from my side of things i can tell you. She is back at the hospital on friday the 29th, who knows what they will say. They have been trying to give her a hystorectomy but she doesnt want it and who can blame her.Marshall
Dear Paul, it is refreshing to know (in a kind of selfish way) that someone, somewhere, is going through, and experiencing the aftershock effects of endo, the up's and down's, the high's and low's, the pleasure and pain of loving deeply a wife or partner suffering , sometimes in an undescribable and imeasureable way, from the dreaded pain associated with endometriosis.
I visited your website and was really pleased that there were some, (at least two), red blooded, masculine, hard as nails, fighting and spitting men who have had the courage and conviction to spell out, unconditionally, how the effects of endo really and truly can have a devestating effect on a deep, loving caring relationship. These feelings and emotions can only be experienced when your partner is an endo sufferer, I know that some people would say "emotions are emotions!", but I can only speek from experience that emotions and feelings associated with endo (from a male persective) are truly unique, something that has a lasting effect, something that burns and scars your inner soul, something that never goes away, lifes biggest nightmare, a nightmare that you want to end, both for your own and your partners sake, something that makes you feel so helpless, you want to cure this pain but can't, you can cook dinner, you can wash the dishes, but you can't make endo go away!
I have been in a relationship with linda for over two years, before, and probably, for at least two months into the relationship, i had never heard of endometriosis, i couldn't even pronounce it! now, two and a bit years later, i'm not an authority on the subject but i think at this stage i probably know more than your average g.p., even without any medical training!.
Linda is a beautiful, attractive, fun loving, caring 29 year old, she works hard and long hours, she used to be athletic, liked sports, and was generally a very healthy lady, she has suffered from endo probably since puberty, however was only diagnosed four or five years ago. Endo has changed both our lives dramatically!
Before meeting linda i didn't know what it was like to see somebody propelled ,(as if by some nuclear source), from a deep comatose, sleeping, position, to an upright, wide awake screaming in pain position in a fraction of a second, the immediate scream of agony, the scream that wakes you, from a deep sleep, the scream, so sudden and unexpected, that it makes you scream as well, the scream that makes you think (just for a split second) that a mad axeman is stood at the side of the bed and linda has seen him first!, then you realise that it is the mad axeman, only in another guise, endo pain! the nightmare that never goes away!
Linda has had three or four laparoscopy's, she is currently taking part in a two operation "blind" trial at our local hospital, the first operation taking place seven months ago, the second about five weeks ago, the first was very painful and traumatic, after the first surgery the consultant came around and without physically saying "yes", we have done something that will make your quality of life better, with a nudge and a wink or two he said "give it a couple of weeks and you should see a marked improvement in your condition. This gave linda, myself, and both her parents (who were also present), a life line, a ray of hope, something to look forward to! it also made us the joint victims of a cruel and painful hoax!, she didn't get any better, she didn't stay the same!, she got worse!! (as this is a trial procedure the surgeons are not at liberty to say whether they have operated in the first or second instance), after numerous visits to her g.p, and ridiculous amounts of painkillers,linda has undergone surgery yet again, don't ask what they have done, we don't know. what we do know is that we have now to wait until july 2000 to find out what they have (or haven't) done, its like walking a tightrope!
It's encourageing to know that there are some other males who are prepared to drop their masculine guard and talk about this horrible disease, its good to talk to someone who doesn't say endo what?, never heard of it!
Even though sometimes the male partner is sometimes on the receiving end of the effects of endo, the moods, the temper tantrums, the quiet periods without dialogue, we love very deeply our partners, and yes!, we do understand!, we don't know exactly the level of pain they are going through, however we as partners do feel pain as well!, when all we can do is give a supportive hug, a kiss, or even just soothing word's, sometimes that is all we can do!, we wish with all our hearts that we could do more, and it really pisses us off that we can't do any more than not love you any less! we can get so frustrated by these effects that we do get ratty, we do get upset, we do want it to go away-YESTERDAY!, partners are victims too!, and I wonder occasionally, if men suffered with endo, would we be nearer to finding a cure.
LINDA I LOVE YOUBarry
Hi Paul Its Jason - Sarah's husband. I have only been married to Sarah for four years now and don't think I understood exactly what pain was until I started to live with Sarah.
Having read your story and understanding exactly what you are saying I felt I had to get a few things off my chest. Not just for my sake but also my wife and the understanding people going through the same experience as we are.
I met Sarah five years ago and we immediately fell in love with each other to the point of after only one month we new we wanted to get married and spend the rest of our lives together.
I knew that once a month Sarah had a bad day but until I started living with her I never knew just how bad. She had been going to the doctors with bad period pains for a few years only to be fobbed of with painkillers.
People including my parents thought she was just lazy because she had to have time of work and spent most of it in bed. Time after time I went to the doctors with her insisting that there was no way this was just period pain, but again we were fobbed off.
Then one day Sarah started to bleed for no reason. She rang me at about one o' clock that day crying her eyes out saying that the doctor thought she may be going through an ectopic pregnancy and would I please leave work and take her to the hospital. This came as a major shock to me and I immediately began to panic.
Having reached the hospital Sarah went straight for an ultrasound scan. She was then admitted to a ward and we weren't told anything until the consultant came round an hour or so later. How could I possibly put into words what we were told next? Complete and utter disbelief that we were being told that Sarah had a large cyst on her ovary and that she also had a disease called endometriosis. I didn't know where to look, what to say, or how to react not wanting to upset Sarah anymore than she already was.
I have to say that was one of, if not, the worst feeling in my entire life. She was later told that she would be having a laparoscopy the following day. I felt sick to the stomach, you know that feeling! After the op the consultant came to see Sarah and I, and explained that this was the worst case of Endo he had seen in a woman only Sarah's age and that if it was not for the fact that he knew that Sarah and I wanted children, he would have given Sarah a hysterectomy there and then. Having left hospital Sarah went on a six month course of zoladex injections. She was a complete picture of health - sadly the course had to end and two months after this course the pain and endometriosis had returned. So now she had gone through the laparoscopy for no reason whatsoever. Every month since that time, Sarah has spent one or two days off work not even being able to stand straight. During those two days most nights are spent with Sarah rolling about in pain with a hot water bottle and a heat pad and me not knowing where to put myself or how to help ease the pain.
So here we are 2 years on still trying for a child with no luck. I know that deep down inside Sarah blames herself. I have told her not to be silly and no matter what happens I love her and will never blame her for the terrible illness and pain that she goes through. This has only made us more determined to try for a child and we now have our names down for IVF treatment. Sorry for such a long message but how do you put something like this into words. Thank you both for your web page, it has helped Sarah and I.Jason
My names Carl ,my partners name is Bev ,I have only know Bev for a short time, but the second we talked I knew she would be the woman I spend the rest of my life with such a beautiful, strong woman. I feel like we have known each other a life time already.
She has recently had an op which I couldn't been there for ,which I still wish I was and this is the first time I have searched for endo to find out more and never knew the suffering she has been through and has had to cope with or will have to cope with . I understand why she stresses and has tried to push me away; as she says she is saving me.
It's not me that needs saving ,I do wish I could take the pain and everything else but I know she would never let me if I could not even just for a minute .all I have to offer is my comfort and myself which just doesn't seem enough .
Thank you Paul and Wendi this site has help me a lot to understand and I hope I can be as strong and much use as you guys have been for your partners
Bev you have had to put with so much in such a small time, from every direction, I will always be in your corner fighting for you, my angel.Carl
Hi my name is Roy. I’ve been with my partner now for over 2 yrs and the last 18mths have been the most difficult period of my life, understanding the condition has been hard in its self but the more I read up on it you start to wonder what these women and my partner Yvonne Richardson are really going through. The condition is not visible to the eye and looking at the person you would not think there was anything wrong with them, but believe me when I say this that my partner and the other women out there are suffering and there is not enough being done to research this, endless hospital appointments the tablets injections they have to take is so real.
I would like to say for all us men that are suffering cause we think our partners don’t want us or love us anymore, think carefully, our partners do want us and they are the ones in pain suffering so they need our support as I’m doing so now for my lovely girlfriend Yvonne.
Love you Yvonne and always will,Roy
In early December 2007 I met Julie at our local gym. I am a very shy person but somehow I managed to talk to her and we struck up a friendly dialogue. Actually, I am not sure if it was I that started talking to her or it was the other way round; I’m a bit blurry on the details, as I am still shocked that it happened at all. Anyway, after we first met on the Saturday morning at the gym we arranged to meet again in the pool area on the Sunday. Sunday came and she was there as she said she would be which was a good start. We did a few lengths, sat in the sauna for a while, chatting, and then moved to the spa pool. We were chatting, playing footsie in the bubbling water and then we kissed. I knew then that this was going to be something special. After we got out of the pool and got changed we sat in the café area and chatted and kissed some more. Maybe the type of kissing we were doing was a bit inappropriate for the café area of a gym, but we didn’t care. We arranged to go to the cinema that night and see a film. I know these are the sorts of things that you would get asked on Mr & Mrs, but I can’t remember what film it was; I was too excited about having a new girlfriend. After the film we went for a drink. We sat and talked. It was then that I realised that I had never felt so comfortable with anyone else as I did with Julie.
Over the following few weeks we inevitably ended up making love. This is where the problem lies. Julie’s endo makes intercourse painful for her. She does not seem to suffer too much in other ways, but sex is painful. At first I thought it was I not being very good at it. Her expression seemed to show that she was trying to look as though she was enjoying it. I now know she was trying to hide the pain for my sake. Christmas came and went; during which time she met my brothers, nieces and mother. It was a good time. I enjoyed spending Christmas and the New Year with Julie. January passed, but although my love for Julie was growing my frustration at the constant problems with sex was also growing. In February I took Julie away for a weekend to a beautiful hotel in Yorkshire. This was the weekend before Valentine’s Day. On the Friday night we went out for a lovely meal together and then back to the hotel. Saturday was spent shopping in York with a visit to the Jorvik centre. Saturday night was spent in the hotel bedroom. We snuggled up and watched a DVD and ordered some room service. The weekend was made all the more special when on the Saturday night, Julie told me she loved me. She had never said that before. She explained that it takes her a long time to show her emotions because of the work she does. She is a nurse working in a cancer care ward. She cannot get attached to her patients because so often they end up dying. Her lack of emotion is a kind of self-defence.
We are now in March. It has been 3 months since we first met. We have booked a holiday together to go to India in April. We are both looking forward to that. However much we love each other though, there is still the problem of a lousy sex life. I have not climaxed once whilst having sex with Julie. We start having intercourse but then after a couple of minutes I remember that it is causing her pain. She has tried turning the light off or trying different positions; all to try and stop me having to see the pained expression on her face. She loves me and she wants to please me, but I cannot help losing interest at the thought of causing her pain. What sort of monster would I be if I could enjoy sexual pleasure whilst inflicting pain on my loved one? That is when I can get inside her at all. Sometimes she is so tight it is just impossible. I can give her pleasure by performing oral on her but she can only take so much of that before she gets shooting pains up her body. The frustration of not been able to have a normal sex life is getting me down. It also raises doubts over the possibility of having children. It has reached the point where I don’t want to have sex anymore because I know what is going to happen. I will give Julie an orgasm or two and then I’ll end up feeling depressed and unfulfilled.
I love Julie to bits. We get on so well together. I just don’t know what to do. Can I go through the rest of my life knowing that sex will never be a part of my life again? I am only 35. I do not want to lose someone as beautiful and fun as Julie. I don’t know what to do. I guess I will just have to take each day as it comes and hope that the rest of the relationship can make up for the lack of a sex life.Stuart
Hi Everyone, my name is Jim and am going to try and tell you about what endo means to me.....
I have two women in my life now! not through choice, more by fate i guess? Who are they then, these two women in my life?
Firstly, there is 'Happy Heidi'
I met Happy Heidi some years ago now, she was bright and bubbly, full of life and at times quite feisty!! Her outlook on life was very much 'Bring it on!' Her smile and laughter was infectious, just as infectious was her kindness and genuine concern for the people around her. She always, and i mean always put others before herself. Very much a 'giver' not a 'taker'. I would challenge anybody out there to find a more loyal friend than her.
Then there is 'Endo Heidi'
I first met Endo Heidi shortly after our relationship started. She appeared without invitation, 'gatecrashing' into our lives out of nowhere. Endo Heidi is a frustrated soul, who is trying so hard to be like Happy Heidi! But no matter how hard she tries, it seems that at times she is doomed to fail. This makes Endo Heidi sad, frustrated and takes away all of her self confidence and hope for the future. Whilst she still cares for those around her, she is surrounded by people who just can't or won't try and understand her (present company excepted folks!) But like Happy Heidi, she tries all the time to put others first.
How then do i live with these two different women? what does it mean for me ?
I still see Happy Heidi, but not too often these days. It is a joy every time she does visit, but alas her visits are over too shortly. Endo Heidi on the other hand, has more or less taken up permanent residence here.
To start with i found it difficult to relate to this thing called Endometriosis. I had heard of it for sure, but i knew nothing about it whatsoever. It was a 'woman thing' and it did sometimes have the 'yuk' factor when it was explained, but it didn't seem to be enough somehow. How could this condition cause the misery that i have witnessed, the tears i have dried or the life changes that have had to be made?
I needed to know more, and to understand Endo Heidi, i could not begin to deal with this until i knew what i was up against in the rivalry for my attentions. This site, the internet in general and various books have helped, but it also clear that it seems to affect all of you in slightly different ways. I made the conscious decision to be with Heidi at all her hospital appointments, and not just sit outside, but go in with her and hear from 'the horses mouth' what Endo Heidi was up against. I am so glad that i did, no matter how uncomfortable it was, or how great the 'squirm' factor was.
It still does not explain how some misplaced cells can cause Happy Heidi to curl up in a ball in pain, walk like jemimah puddleduck, go weeks without proper sleep or fear any sort of physical contact. I have developed a pretty good Endo Radar now, and fortunately for me Endo Heidi is not very good at covering things up! I think that the truth is that as far as medicine goes these days, there is not going to be an answer any day soon. So for now i have to find ways to deal with this, and most importantly support Endo Heidi.
What can i do then to support these different but wonderful women ?
- Be patient. Some things are worth waiting for!
- Empathise, never sympathise.
- Be the best listener you can possibly be
- Be prepared to be on the end of the angry gun, for me i know that it is Endo Heidi just trying to express herself.
- Be there....even if it takes you out of comfort zone...just be there!
- Sex isn't everything...a cuddle means so much more sometimes
- Educate...friends and family, in the workplace....educate!
- Tolerance...Endo is not an excuse for bad behaviour, but it has to be considered.
- Don't take any waffle or crap from medico's - be prepared to challenge. After all you know about this condition, you do not need blind faith!
- Believe that it is all worth it!
I believe that with 'Both' Heidi's it is worth it. She is special to me, my little Endo Warrior.
Guys, don't be afraid get involved, educate yourselves and understand more. It helped me, perhaps it will help you.
Thanks for the chance to say what i feel...Jim
Hi my name is Patrick and my wife is Cherl, I thought it be good if I write too, to explain how life is living with my wife and Endo.
I feel like shouting and screaming at the doctors, when they say its stress or something like that. My wife is normally a hard working fun loving person who loves life, but now she is an empty shell always in tears, and always in pain. In fact at the moment there isn’t a day when she is not in pain, she has lost her appetite for food and life, some days she doesn’t get out of bed for being in so much pain, she just cries and I feel useless as a husband.
I love her so dearly and would give anything for her to be pain free and back to enjoying her life like she used to. She often says “Why is it happening? Why is the pain so bad?”, yes I have read the ladies stories and now they think my wife has in fact been suffering from endo for twenty years but always put it down to something else but now the pain seems to have won and taken her life over.
I will always be there and try to comfort her when she is the lowest and try and reassure her that she is not alone and one day life will be better. It’s hard watching the one you love suffer so much, and it’s so frustrating seeing how some of these doctors treat her, without getting very angry. She is my lovely wife and I hope one day she will laugh again and be pain free, I’m not bothered about sex but she feels she is letting me down; she is not because I love her for being her.
I just hope that with all the people suffering there will be some relief for them all.
Good luck and best wishes to all,Pat
Hey everybody, my name is Jay, I'm 25 and from Lancashire and this is my story.
I feel embarrassed because it’s nothing compared to what I’ve read on here and I’m in awe of the people on here.
I was with my girlfriend for 5 years and everything was perfect, my match made in heaven. In 2007 she got pregnant and we were over the moon as we could see the rest of our lives together. Not long into the pregnancy unfortunately my girlfriend miscarried and this is when everything started. For weeks she suffered pains that were unbearable but every time we visited the hospital it was "don’t worry it’s just the after effects, its normal".
A month or so later a visit again to the hospital and we were introduced to Endometriosis and that’s when everything changed I thought to myself "it can’t be serious" because of many reasons:
1) We both young and we are in good health
2) I have never heard of it and don’t even know what it is!
But I was wrong. My girlfriend was going through pain after pain after pain. It was horrible to see her like this and it became an emotional nightmare.
Late last year she could not bear it and it split us up. She’s finally let me back in her life as a friend for now and we have more tests coming up in July. Why is something so serious not made more aware to the public? How can I say everything’s going to be ok when I am so unaware of what’s happening. I saw this site many months ago but denial kept me away but having read a few stories of both the men and women here I have hope that your courage and determination will inspire us too. I feel there’s lot more to say but it’s difficult to put into words.
Thank you for reading,Jay
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