So fed up :-(

[Darci56]

I have never wrote on a forum before so I'm not sure if I'm getting this right, but if I am here goes....

I am 25 years old and a sufferer of Endometriosis.

When I was around 21 I started with symptoms a year after I gave birth to my daughter. The symptoms were at first just pain during intercourse. I was constantly at the doctors begging with them to help me because it just didn't feel normal to be in the pain I was (sex used to be a pleasurable experience and it was now a chore...and a very painful one at that). To cut a long story short, my doctors were horrific and for 2 years told me that it was nothing and not to worry. They put me through endless STI checks telling me they had "probably missed something" each time. Eventually, my mum paid for me to see a Specialist at a Private hospital (who has turned out to now be in prison for child pornography on his computer) and at the time of the visit he told me that he was going to send a letter to my GP requesting that I go for a laparoscopy. However, when the letter was received, it stated that he felt it was all "PHSYCOLOGICAL" and he wasn't concerned. This then meant the doctors ignored me still and my Fiancé who wasn't getting any sex was complaining saying "Kim even a specialist agrees that there is nothing wrong". I thought I must be going completely mental. In this time I had lots of unpaid time off work, looked like a terrible employee at work, fell out with my fiancé consistently for the lack of sex, it was horrible. Eventually I changed doctors because one day after sex I stood up and there was blood all over the bed and I couldn't physically stand up properly i was doubled up in pain. This was when my Fiancé finally knew something was seriously wrong. My new doc sent me for a laparoscopy (finally) and that's when we got the news that I had the highest grade Endo which covered my ovaries, bowel....basically everything. Not only that but both of my ovaries were attached to my bowel. They arranged for another op where they would do what they could. This was done 12 months ago and I had the mirena coil fitted. However 6 months ago I had it removed up start trying for a baby. Nothing has happened in 6 months, just lots of hopeful pregnancy tests with negative results every month Now to why I am writing on here....2 weeks ago we had sex and straight after I had what I can only describe as a 40 minute contraction. I was on all fours in absolute agony. The pain was unreal. My fiancé was so concerned he wanted to call the ambulance. After 6 pain killers I finally fell asleep. The next day I woke up and my stomach was so swollen I looked 20 weeks pregnant. And I was so sore I couldn't even sit down on my bottom as I kept getting shooting pains. Since then (2 weeks ago) I still can't sit without getting a shooting pain through my lower abdomen, and when I stand from sitting down the pain is so severe it shocks me for a few seconds. Not only that but my lower back has a constant dull ache too am I feel an almost need to bare down in my bottom. I've been to my docs and at first he's prescribed me Cefalexin thinking it may be a water infection but I've had water infections before, this definitely isn't one. He's also referred me back to my surgeon. Has my endo come back with a vengeance because I'm worried this may be the case? I'm so fed up. No one understands this pain and I feel so dramatic talking about it. Also I'm concerned if it is back and I have to have an op, I'm going to need more unpaid time off work. I'm so mad that I could of got help for this years ago and everyone ignored me when they should of helped. I'm 25 and I should be loving life but I am just in constant pain, desperate for another baby and being constantly begged for a baby brother or sister by my daughter. I can't have ivf free because I have one already and my daughter isn't my Fiancé's biological child. I feel like I'm impacting his life massively. He says he doesn't care because I've already provided him with a beautiful child though not blood related. But I can tell he is desperate for a baby of his own. Please help. I'm totally lost. X x x x

[Catt83]

Hi Darci56. I am also really new to this but just thought I'd share my story to show ur not on your own, I went on the endo helpline 3 weeks ago and knowing there was someone else going through the same helped me.

I first started with pain around 8 years ago. I got told by my docs it was just nor al period pain, and that I was maybe just stressed out with sex so that was what was making it painful. I changed doctors and 2 years later got referred for a laparoscopy. It found nothing and although this will sound strange I was gutted. I wanted to know it wasn't in my head. They fitted a mirena coil. At this point I was 25. The pain, periods everything stopped. For 4 years I had non symptoms then in October 2011 I got severe pain in my side at the time being told it was kidney stones. Throughout 2012 my periods gradually got more painful till January 2013 when they began to become unbearable. I should add that I have always had IBS like symptoms throughout but these became more pronounced in JAnuary also with severe constipation before my period and diorrehea afterward. I got referred to a bowel specialist and had a colonoscopy which showed nothing. I then got referred to gyny who told emit was bowel related. The bowel specialist referred me for an MRI scan which showed thickening on front of my bowel. So I was referred back to gyny

By this time the monthly pain was so bad that for 3 days each month I was going to a and e and ending up on oramorph. I couldn't wait till September 2013 for a gyny appointment so I pain to go private. The consultant referred me for another laparoscopy and found I had stage 4 endo localised round my bowel but attaching it to my bowel. He said at the moment. My fertility looked ok (30 and no kids yet!) he wanted to see me in 3 weeks and the bowel specialist in 2. I went to the bowel specialist and got a registrar who told me I would need a bowel resection and a ileostomy. This sent me into melt down. A week later I got the monthly pain but so sever I was hospitalised on a mix of oramorph and intravenous morphine for 3 days. This was last week. I was released last Saturday since then I am struggling to open my bowels although taking lactulose and senna. I am unsure whether this is due to scar tissue or the pain killers which I came of Wednesday. I am due to see my gyny consultant Thursday. Hopefully he will have some more answers for meand I won't need a stoma

I don't want to take over your post but just wanted to say I share your view the NHS is a nightmare when it comes to endo and they seem to be oblivious to it!

[Lillil]

So sorry you are both having a horrible time.

Darcie it sounds like the pain you are experiencing is endo. I had the whole needing to bare down sensation and agony on sitting then pain and exhaustion when i stood. I constantly felt like i was sitting on something. I didnt know what to do with myself!

My endo is on pouch of douglas and utero sacral ligaments, the drs also think i may have adenomyosis too...look it up and see if symptoms seem like yours.

Ive just had my sixth monthly injection of zoladex. It was hell to go through and has tons of side effects, you cant get pregnant whilst on it or for four months after but its given me my life back. Id had nearly six months off work and now back full time. Dont think my life will ever go back to normal but slowly learning to manage it.

I also am now on a wheat and gluten free diet and its helped me tons pain and fatigue wise. When you have endo on bowel, the endo diet can make all the difference.

Catt i would go to your gp and ask for movicol instead of lactulose and senna- they arent very effective after lots of opiates like morphine. You may also need a suppositry or enema .

Good luck to you bothxxx

[sam_naylor]

I know how you feel, I've been with my partner 6 years and since we very first had sex to even now it's been painful everytime. I put up with it because I have quite a high pain threshold but I went the drs loads they fobbed me off with 'infections' or 'lack of lubrication' etc. About 5yrs ago when I had my son I started getting other problems but just put them off not realising they were related. Almost 2yrs ago I started getting pain everytime I opened my bowels but never thought that was related to the other things. I'm going for my first lap in 5 weeks for endo. I know how you feel about the painful sex it's so awful. &i too have had plenty of Fallings out with my partner because of it. :(. I hope you get an answer soon and have a painfree relationship & have another baby! p.s. It took me 8 months to conceive my 2nd child.