No end in sight! Bowel problems? Endometriosis? Bowel Endo??

[BeckyR84]

Hi everyone, new to this site and only here because my partner has convinced me to chat to others to see if I can get any help, advice or support.

I've been suffering with lower left abdominal pain for over a year now, I have very heavy periods and the period pain is also really bad, I was told by my gp to take the pill back to back for up to 6 months so that I wouldn't have to go through the hell every month of having a period, I have suffered with my periods for years but out of nowhere last year this awful pain started in my lower left side. The pain I get is a horrible stabbing pain in the lower left and pain going down my groin into my left leg. It started as a pain that would come and go but now I have it daily and I don't know how much more I can take. The pain gets worse when I need to empty my bowel or bladder and I am always suffering with diahorea, it has got so bad that it feels it is ruling my life, I also feel so uncomfortable on the left that I feel there is something there. I had a laparoscopy back in February which didn't find any endo, the only way I managed to get this done was to pay to see a private consultant, I have also had 4 months of the prostap injection which I believe took the edge off the pain, but the consultant said because my pain hadn't completely disappeared that he didn't believe I had a gynae issue but to start to take the pill back to back again. I would have been due the 5th injection last week and have been hit with pain that I only used to get in the days leading up to the injection! I am in constant pain and I'm getting so depressed with it. I have a colonoscopy booked in for next Monday which I'm dreading, my gp I guess wants to shut me up and rule out any bowel diseases, I'm sick of hearing my gp say he thinks it's 'only' IBS, I've had IBS before and it is nothing like that! I have had an MRI and a CT scan which hasnt shown anything up. I have also unintentionally lost 5 stone in 2 years and don't have much of an appetite anymore due to the pain. I have a 5 year old son and feel I am letting him down as I am always so run down and in pain. Is it possible that the only laparoscopy I had could have missed endo or is it possible I could have endo on my bowel which has not yet been found?? Any help or advice is more than welcome or just some support from anyone who may be in the same boat as me. Thanks x

[Fifi1987]

Hi Becky. Like you I have the same pain and its took me 14 years (since I was 15) to get diagnosed. I am having surgery in October to remove endo from my cervix, ovaries, bowel, bladder and rectum. I had several laparoscopies and nothing showed at first. My consultant has since told me that endo can flare up and be there one day, then on another day, cannot be seen at all. So just because it hasn't been seen on one laparoscopy does not mean it's not there. I know it's hard to deal with when you're going to the doctors and get told "it's just IBS" I got told this for years. I'm so happy I am now getting the correct treatment. You know your own body best, don't accept an answer if you feel like something is wrong. I kept going back and back to my GP until I finally got taken seriously. I hope everything goes well for you. Xxx

[Susybee]

I can totally relate and sympathise. The pains individually you can just about bear but when they all gang up on you it's torture. I have sciatic pain that has been constant for 5 weeks and permanent back ache and left lower stabbing pains, ibs for over 20 years and am too wondering what they missed at my last laparoscopy as 6 months later symptoms are all back. It's hell but you definitely came to the right place for support. You'll find lots of sympathetic ears here. All I can say is try stay strong see what the colonoscopy reveals. Have a read about rectovaginal endometriosis, Lindle on this site can advise you too but it's one that gets missed and can cause a lot of bowel problems. Not to say it's that but always good to read everything as you know your body and the symptoms. I'm just going to an endometriosis specialist gynecologist soon for a consultation and I'm going to list everything I can to try get more answers. Chronic pain is so hard to deal with I'm on naproxen and cocodamol and laxido just to keep going and working and have a 4 year old so I understand where your situation too. All the best, stay reading this site for support xx

[GrittyReads]

You need to see a trained 'Enometriosis Specialist Gynaecologist' at one of the 'Endo Specialist Clinics' (BSGE Clinics/Centres) . Find the link to these on the 'Endo UK' website [link to it at the top of this page].

General gynaes often miss, or do not recognise 'endo' as they need to be specially trained in all aspects of Endo.

If your GP will not refer you [read Lindle's posts to check the official requirements for being referred to an 'Endo Centre'], maybe you can have an initial consultation privately with one of the BSGE gynaecologists, but it's worth reading all of the 'Endo UK' site, for info, as well as all of Lindle's posts.

I think it's worth having the colonoscopy to be sure it's nothing else serious, but if it's all clear, don't be fobbed off with mutterings about ibs, as a lot of ibs in women can be endo on the outside of the bowel.

But read all you can: Endo is one of those conditions where we need to become our own best experts, as many GPs, and even Gynaes, just don't know enough about it.

Take care.

[Loulou24]

For years my doctor said I had IBS and ulcerative colitis. It was only when the hospital did a sigmoidoscopy and biopsies that the consultant wanted to compare slides with a previous colonoscopy. He doubted I actually had colittis and IBS. I kept having the abdominal pains and my doctor kept saying it was IBS or insultingly a STD!!! I changed gp practice and finally was taken seriously! The doctor was so kind and straight away referred me to have a laproscopy and they found endo. Def follow your instincts. I found that following mine was the best thing I ever did. good luck x

[BeckyR84]

Had my colonoscopy today which was ok, a little uncomfortable so had to up the sedative! The prep was absolute agony, going to the loo was fine but the pain I had was agonising, nearly ended up calling an ambulance but had oramorph and went to bed. The man who carried out the colonoscopy said it was all clear although they did take a few biopsies. He also said he'd viewed my previous scans and said they were also all clear. Can't believe nothing was found, after the agony and tears I was in yesterday I was praying I'd get to the bottom of this hell. No idea now what to do as I can't live this way in pain but they seem to be washing there hands of me. Any ideas what I could do next as I can't carry on like this? There really is no end in sight!!!

[emmaibiza in reply to BeckyR84]

Hi hunni Sorry you are having such a tough time. I can sympathise with you. I was under a gynae consultant in 2013 who did a laparoscopy and said on the letter only a tiny bit of Endometriosis was found and what can only be classed as mild so they basically said I shouldn't be in pain as the tiny bit of Endo would not be causing the pain etc. I felt like I was making it all up then I found a top gynae consultant at a bsge centre who did a laparoscopy in March 2015 and said I was literally coveted in Endo it was all over my bowel and bladder and everywhere but ovaries so I spent 4 hours in surgery. It would be worth getting a referral to a bsge centre. If you Google it that should bring up the hospitals who are bsge endo specialist near you hun. I've also got adenomyosis which was found on a mri but I have heard that it depends who looks at the mri report and if they pick up the adenomyosis most of which don't so maybe another mri at a bsge centre. Your gp can refer you to a centre. If you want the link let me know and I'll send you the details.

Big hugs xxxx

[BeckyR84]

Thanks for your response, what made you decide to go to a bsge centre? The problem with me is all tests have been completely clear, nothing at all has been found, I know I'm not making it up but I feel that's what people are thinking! Wouldn't my laparoscopy back in February and colonoscopy today have shown some endo if it was present? I'm not in pain like this for nothing! Thanks Becky x