I am 28 and was diagnosed with Endo in July 2007 following a Laparoscopy. This is my story so far:

I had been suffering with severe period pain since starting my periods when I was 13; from day one they were awful. I missed a lot of school as a result of the pain and the heaviness which continued into my late teens. After several visits to the doctor I gave up going, I was sick of being told "it's part of being a woman" and "you'll grow out of them". But I didn't, the pain only got worse as I got older.

After I finished college I decided to go to Law School, I needed to devote all my attention to my studies and so went back to my doctor. I explained that I had always suffered with heavy irregular and very painful periods and that now had come a time when I couldn't spend days at a time laid up in bed with pain killers and my hot water bottle. I needed help easing the pain. Again I was told your young this can happen, but the pill can help and I was put on Cilest. My periods became regular and a little lighter but the pain didn't ease. I went back and was given Ponstan, which did little to ease the pain. I found that a cocktail of painkillers was the answer and lived on a combination of Ponstan, Feminax and Nurofen!!!

Until one day I had had enough. The pain was constant and I was bleeding all the time. I made an appointment to see a new lady doctor that had arrived at our surgery. She was lovely and after I poured my heart out to her she referred me the see a Specialist at our local hospital. This was in 2005 and literally twelve years after I had first complained to my doctor!!! The specialist was male and awful with me. From day one he treated me as though what I was saying couldn't possibly be true, I wasn't possible that I had this constant ache in my lower stomach and back, he said there was a chance I had Endo but he doubted that the pain would be as I was claiming. He changed my pill and said to see how I get on.

After several visits later and getting nowhere and certainly not feeling any better I saw a lady registrar, she examined me and said she thought I had Cervical erosion, which would explain the bleeding!! I had a cervical biopsy to rule out anything nasty and was told that I did have Cervical erosion and would need to have my cervix cauterised. I had that done but still the constant pain was present. I was due back at clinic and again explained how I was feeling to the specialist. His reaction was as you are not trying for children time isn't of the essence so let’s see how you get on. I walked out in tears. How could he say that because I wasn't trying for a family he wouldn't find out what was causing my pain? I cried all the way home. Straight away my mum made me an appointment to see her GP and came with me. We told him what had been going on and he referred me to someone else.

Within three months of first seeing her she had performed a Laparoscopy and diagnosed Endo. I was told following the op that some of the Endo had been "burned" away but that it was still present on my bowel and that my bowel and womb had actually fused together. This was the cause of my pain. I was not cracking up or imagining it there was actually something wrong. I was however heartbroken at the thought, I was told the endo was quite severe and although my ovaries seemed fine, it could affect my chances of having a family. Following the op I was advised to go on Prostap together with HRT, I was happy at the thought of either but thought it would be my best shot. The side effects where awful but the pain was minimal.

I had six months of injections then following a consultation decided to come off them. But my periods didn't return, I was cramping again all the time but not getting any release. I went back and was put on Microgynon... what can I say... I don't know what was worse!! I was in pain but at the same time angry with the world, crying all the time, I went to my GP who said it was an awful pill and took me off it with immediate effect. I was awful but my periods did return whilst taking it. Sometimes though I wish they hadn't!!!

I was back to square one. I went for another follow in April 2008 and was put Yasmin and told to take it constantly for three months at a time...but I'm no better, the pain is there all the time and whilst I'm not doubled over until my pill free week it is a constant sicky ache in my back and lower stomach.

I went back again on the 4th November 2008 and was told that the pain is a direct result of the fact that my bowel and womb are fused... I have been offered bowel surgery but there are apparently only a few surgeons that will carry the op out. I have gone back on the Prostap and have injections every four weeks until I decide if I want to give the bowel surgery a try... Wish me luck!!! It’s a case of which is the lesser of two evils... the pain or the side effects. So far it’s only been a week and I'm not better... I hope to God they work!!!

Since being told about this website and reading other people's stories I have realised that I'm not the only one, there are others that suffer in the same way as me... but we suffers of this awful disease are extremely unlucky people!!! Good luck to you all.

Update February 2009

I added my storey so far in November 2008 when I found this site. At that point I had decided to give the Prostap another try. I've had injections every four weeks since then but I'm not much better than off them. I'm still getting my periods which are heavy and extremely painful and they are combined with the "menopause" effects of the Prostap.

To cut a long story short at the beginning of January 2009, I'd had enough and me and my consultant decided I should be referred to an actual endo specialist. It was really quick and I had my appointment on Tuesday. Didn't actually see him which is another story, but saw not one, but two of his registrars. Basically they won't even consider the bowel surgery until they have done their own diagnostic Laparoscopy. This is despite the fact that I was diagnosed with stage 4 endo in July 2007 following a diagnostic Laparoscopy! Anyway they have booked me in for the 27th March, two weeks before I'm due to go on holiday, they actually wanted to do it either this week or next, but I wasn't prepared for that, it’s way too soon plus got issues with work to sort first! Plus the hospital is literally thirty miles away from where I live because of the cross referral!

I'm dreading it!!!

Wish me luck girls and I will update following my next Laparoscopy.

Update May 2009

Well ladies I had my second Laparoscopy done, 27th March, so much for expecting to be off work a couple of days, oh no! I was off right up to my holiday and even if I hadn't been going away, I would have been off sick. I can honestly say that I have never experienced pain like the pain when I came round from surgery, it was so much worse than last time. I then got a really bad infection which led to the belly button wound opening and unfortunately it’s still working on closing up and is oozing and tender. It’s looking better though as each day passes thank goodness!!

Well here’s the update, I saw my consultant last week, and the good news is there is nothing sinister going on, other than the endo, which despite the Yasmin and the Prostap has continued in its attempt to fill the whole of my abdomen!! It’s much worse than last time and it was bad then. Now not only are my bowel and womb joined but my pelvic wall and bladder have all decided to join also and because the meds haven't worked so far he says it’s very unlikely that they ever will. So I have three choices:

1. Do nothing (which won't help)
2. Continue as I am taking the Yasmin continuously (which isn't helping)
3. Have major surgery (which may help. may not help but its the nest chance of removing it).

Am I left with a choice you might ask; the answer is a big fat NO!! So I've agreed to have excision but I have to be prepared for all the risks that go with it, colostomy etc and that if this doesn't work at the ripe old age of 28 I will need a Hysterectomy!! The joys... So I'm now waiting on my date, he said the sooner the better so hopefully July/August. Not feeling too good at the moment so it can't come soon enough to be honest. Having loads of pain and the bleeding is hit and miss. I just hope it works,

I really want to feel normal and it’s been so long it’s hard to remember just what normal is. If any of you have had this type of surgery I'd appreciate your stories just so I know what I'm letting myself in for. A part of me is thinking I shouldn't have it done, what with the risks, the time I will need off work and the fact that the hospital is miles away from home and it will be difficult for people to visit. I have to stay in and it’s just going to be awful.

Anyway... Hope everyone is OK

Update November 2009

Well it’s been a while since I last updated my story so I thought it was time to give a little info on what’s been going on. I had my surgery... reluctantly!! I was very nervous, well, terrified in fact and up until I actually got to the hospital I wasn't sure I was going to go through with it, but I did and I'm glad I did. I had it done on the 20th August 2009, I was so scared, especially when they went through the risks with me and said that they may have to remove one of my ovaries. That’s when it became real and I though OMG there is a chance this could all go wrong and they could realistically take everything!!

When I came round I was in agony but the oramorph is a wonderful thing! I was also catheterised so I was frightened that they had damaged my bladder. I was told that the endo was everywhere but had been successfully removed. All my organs where stuck together and my bowel was all concertinaed up. There was also a large mass of endo on the bowel and the Dr said I must have been in agony with it. He confirmed he'd removed it without damaging anything and had also left both of my ovaries intact although my right one was inflamed and stitched up. He said that there were no guarantees with this surgery; I have to say he didn't look nor sound optimistic that it would work; he said it was likely to get worse before it got better!

I was discharged after a couple of days and free to return home, with strict instructions to take it easy and not to return to work for four to six weeks. Stupidly I went back after four... needs must and all that.

Since the op, I've not been too bad, in the weeks following I felt awful, I had good days and bad days and blinking awful days! I also got a couple of UTI's which really didn't help things at all. Now though, I'm OK (touch wood). I do have bad days, but the pain is mostly manageable. My GP has put me on Piroxicam (a strong daily Anti-inflammatory) and I think they are helping, I don't take them every day now, and I’m trying to get by without them. Some days I am totally pain free, some days I have a dull ache. Some days I have an agonising sharp pain in my right side but still I'm coping with it. I'm nowhere near as fed up and certainly not as tired... I'm just hoping that I stay the way I am now. I'm beginning to think that it has all been worth it although I'm not counting my chickens just yet... I'm still in absolute agony at that time of the month, well I have been the couple I've had since the surgery... we shall just have to wait and see and keep fingers and toes crossed.

Update June 2010

It's been a while since I last updated, so thought I would fill you guys in on what's been happening. I saw my consultant in December, it was the first time I had seen him since her carried out my op and removed my endo. He said the op had gone well and he was pleased with how I appeared to have recovered. I advised him that my periods were still hell but that my good days were getting more and more frequent, I wasn't nearly as tired as before I had it done and all in all seemed pretty well OK. Save for those days when I was due on, on or just off. He said that was normal and to be expected and to help ease matters it would be best if I took my pill in three monthly cycles. That of course would mean less periods, no ovulation and therefore no pain. Or so you would think!!

Well no, the first couple of months it all got worse, I had what I thought were constant UTI's and following several visits to my GP and e-mail's to my consultant I was referred to a urologist. I had very high amounts of puss in my urine and no trace of infection. I then had to have a cystoscopy (three  weeks ago) and have been advised that I have Interstitial Cystitis? And an un-explained shadow on my right kidney! Well that explains the UTI symptoms but not the constant pain that is gradually creeping back. I have also been bleeding now for a solid 15 days!

I saw my GP yesterday who can't give me an explanation, my consultant can't see me until end of July so I have basically been told to put up with it and hope it settles down. So crossing fingers again in the hope that it settles down and that the pain issue is simply a blip and won't get any worse.

Feeling very down again, hoping desperately that everything I went through last year wasn't for nothing and it doesn't get any worse. Update again when I know more.

Update July 2010

Hi Guys, I said in my last update that I would update again once I had seen my consultant. Well I saw him last week, and explained everything to him. As always he was lovely and patient and listened and didn't look at me as though I was going crazy.

Following a very painful exam and a very detailed discussion regarding my pain, he thinks that the majority of my pain is coming from my right ovary and has suggested further surgery to remove it. After everything I've been through I can't yet face more surgery and have declined that option until such time that the pain becomes unbearable. He also thinks that I have Cervical erosion again, a consequence of taking the pill so long and that I am very unlucky to have diagnosed with IC was well as endo and that that in itself is a very painful conditional.

We agreed that the best way forward for me is to be conditionally discharged. I know I need more surgery but at the present time I can't face it and its pointless having endless apps to discuss the same issues. He did say that the minute I feel ready for the op or simply need it all I have to do it call his secretary and be put on the list, which is really good, I won't have to start the whole referral thing again.

He also said, that it is likely to get worse not better and that if it does the last thing he wants me to do is think it's all in my head and ignore it. How many Drs would say that? So I'm continuing with the Yasmin for now, eight weeks on - one week off, that way my body shouldn't reject it as it has in the past and I'm seeing how I get on.

I know I will need the op at some point just hope it's in the distant future...

Emma's EndoStory has been viewed 2264 times since Wednesday 17th December 2008.

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