Hi Well Iím 24, was diagnosed with Endo at 18 after suffering pain during sex with my first partner. I was diagnosed after mithering the doctors that something wasn't right (I mostly got told that you're too young to suffer anything serious). Upon a laparoscopy they found endo on my pelvis and ovaries and subsequently treated for this.
The pain subsided and then gradually came back and I started to suffer with pains, this time on my bowel. Well I have currently had a colonoscopy (for which I would say to anyone with endo, if recommended, have with caution) for investigation for colitis etc as the Gynae clinic said I was too young for endo on the bowel. Well low and behold the Gastro Clinic suggest that I in fact have endo in the bowel. I am currently waiting on results and taking pain killers etc.
With me being so young I do often find that people my own ages don't understand my situation when I get pain or become depressed and often find that my partners get fed up of, to put it bluntly (lack of sex on tap) and often find myself in the same spirals of being alone or walked out on.
Hopefully I can gain some self esteem back on here and help and guide other people who need help or just a chat
After having numerous Gastro tests done , it was confirmed that the possibility of my endo spreading had came true. I went back to my Gynae who agreed to carry out another Lap.
I had a lap in May 2010 - where i t was confirmed that my endo was worse than first thought. It had spread to the back of my bowel, my appendix, my ovaries, the pouch of douglas and all over my pelvis. Due to this my Gynae could not remove any of it but merely drained a chocolate cyst and put me on Prostap injections.
I didn't know what these where at the time and feared the worst...
I had Livial HRT alongside (which to be honest I don't think did much)
I had night sweats, nightmares, palpitations, anxiety attacks, hot flushes etc etc I beared with it the best I could but the pain was still there everyday
by Jan 2011 I told my Gynae that I didn't think it was improving things but actually making it worse, I ended up in A & E at one point with a servere panic attack which rendered me unable to drive.
My Gynae referred me to a specialist at Arrowe park for further advice on appendix removal as my bowel symptoms where getting worse.
Update September 2011
After my referral to Arrowe park, I was booked in for a lap in June 2011. This involved:
- Removal of part of my Caecum
- Abalation of endo on both fossee
- removal of endo from Uretha
- Excison of endo from pelvis and bowel
- Mirena Coil fitting
Recovery is slow still, I was pain free for about 4-6 weeks and recently have had a painful pelvis, burning, stabbing and constant throbbing. I am hoping that isn't the start of this horrible cycle again. Until then its more of a case of taking each day as it comes.
Update November 2011
Well it has been a roller-coaster to say the least!
Been back and forth from the doctors due to the increased pain and bleeding from the coil, the emotional effects have kicked in too now
I have decided that I can no longer cope with the coil for another six months, I'm in my final year at Uni and I need to be emotionally and physically at my best and I don't think the coil is giving me or is going to give me this.
I have a hospital app on 5th December so hopefully they will remove it, I will agree to alternative treatment such as the implant but the coil has unfortunately caused more pain and outweighs the positives as I am bleeding more now than I was without any hormones.
Oh well onwards and upwards!
Update June 2012
Well its been up and down and left and right since Nov!
Not only have I had two hormonal changes - Mirena taken out , Implant in and then out again; I have managed to finish my degree in one piece. It was touch and go though, a few tears along the way!
Anyway, the pain has gotten worse, the side effects even more so. I now suffer from
- back ache
- Tender tummy (cramping, pulling, tugging, sharp pains)
- stabbing pains (up bottom and lady parts)
- painful urination, wanting to go more and it takes ages to go (if that makes sense)
- sore boobs
- contraction type pain
- sore belly button???
Next stop is my hospital app on the 11 June were I get to see what they want to do next as at the moment I am on no hormones. xx
Update September 2012
Just a little update. Hospital in June agreed to keep me off all hormones and book me in for lap number 4 which is booked for 8 November.
Since then it has been a roller coaster. My anxiety got worse (thankfully it now tracked according to my cycle so I am now starting to accept it) , my pain has gotten worse slowly , again I can track it with my cycle. I had terrible dizzy spells, these have now eased to the point I only suffer around ovulation.
So it is now a case of waiting for the operation to see if it has spread or whether I have adhesions or whether it is just a case of pain management. x
Update November 2012
I had my Lap where they freed up my right side and burnt away the endo. At the point of being in hospital I was under the impression that they had gotten rid of all of the endo as the nurse said it all went okay and things are fine.
Update December 2012
I have been suffering from gradual in crease in pain in my left side and my right side is very tender. I have been suffering from bouts of nausea which I have had to take anti sickness meds.
Update February 2013
I had my check up at the hospital, expecting to be signed off however when I went into the room , I explained that I was in pain and the consultant explained that he only had time to look at my right side , My endo was widely dispersed and all over my body. He also explained that my left ovary and left tube was pretty badly damaged. I now have to take the pill cerzette to stop my periods and well I am booked back into hospital in June 2013 to have my left ovary and tube removed.
I am kind of still in a daze about it and trying to maintain the pain levels whilst trying to deal with the side effects of the pill!