Is it Endo or adhesions, Drs will not help me now

[Mrss25]

I'm currently back under investigation again for pelvic pain on left side. It's the same pain I've had for 27 years and I had a hysterectomy and bso in February 2015. Previous to that I had 6 months of decapeptyl injections and I felt great, no pain at all, it was wonderful, so I was full of anticipation for the hysterectomy bso to work.

How wrong was I. It has progressively returned since then.

They removed my cervix in February 2016, but it's no better.

My gp thinks its undiagnosed endo or that was not found or removed during the operations, but I'm always met with consultants who are quite dismissive.

For example, my mum, aunt and both my daughters have endo but the consultants tell me it's not hereditary, decapeptyl is used for endo and pain disappearing is a clue that it's endo, but again they say not. I was told by the hospital last week it does not mean It’s endo or fibroids when the injection cures the pain, as it works for all sorts of conditions relating to hormones, and they do not know what it worked on for me, as I was like a new woman on it, totally pain free.

I had a deep ct scan on Friday on bladder renal area, but the pain us always in my hip bowel and left bum cheek. They said it shows inflammation in that area but not sure what is inflamed, ie the joint, ligaments ?

It would be wonderful to hear from anyone who has/had a similar situation and if they could let me know what and who helped them, as they have said nothing more they can do gyneocologist wise as I’ve nothing left. I can barely walk some days and my bowel is so sore on this side at times.

Many thanks 😔

[Mrsdep]

I had a total abdominal hysterectomy due to severe endometriosis and excrciating pain down left side. The consultant explained to me that the sites of endo can produce a thickening of wall linings & tissues which is more than likely the cause of this pain on the left side but unfortunately this could not be cured. I retained my ovaries as the consultant felt that although a hysterectomy would relieve a huge amount of pain i suffered I would still have sites of endo that cannot be removed. I am feeling so much better in myself a year on from op but I do still get hormone issues, mood swings, fatigue etc prob due to retaining the ovaries..... I also often have a heavy dragging feeling in bowel area which i used to get prior to op but the only difference is I no longer get the relief of a bleed! This always settles in a day or two. I am currently prescribed Livial Tbolone 2.5mg per day to boost hormone level.

I totally understand the annoyance and disappointment you feel suffering as you are. I would suggest you visit your GP and ask if it might be thickening of tissues/scarring??

Good luck and stay strong! xx

[caroljane80]

Hi i know its an oldish post if your still reading . Your situation sounds just like mine except the pain is on my say (appendix side as left and right can get mixed up ) , exactly where it has been for years and woosh zolodex or some kind of monthly injection and in 1 week no pain. I was pushed into the hyster as they said its either that cos we are stopping the injections ( i managed 2 years out of them ). 4 days after hyster with ovaries removed and to date just over 2 years . Been hell still is and like you it seems impossible to get anyone to do anything! I notice that they can say it isnt say endometriosis but they will leave out that it could be x,y,or z. For example one gyne was tricky about menopause ( in his mind and technically correct was im not in the menopause as ive had periods within 2 years . No info or talking about peri menopause etc . Or they say its not gyne ( but miss out that it can be on your bowels ). Really they should be more helpful . My nhs gyne has been particularly noxious and aggressive id say so i dont go. I went private ( still no joy except adhesions on my bowel ) , his op didnt help. I went to an endo specialist further south, his op no difference. I got him to do a second look laparoscopy but unfortunately, i was taken off the nhs list as id moved my appointment twice. The last time i told them that id collapsed unconscious for days and amnesia for about a month. No idea the procedure was scheduled til i found the bit of paper. I rung them but there was no changing their mind. Then they said hes not taking nhs patients anymore. My last hope is that my gp might refer me elsewhere or come up with something new to check. I cant believe the amount of pain im in daily . Im 99% sure its linked to when i take HRT but i am truly hormone depleted i know due to night sweats and a private blood test. The worst is they just disbelieve the amount of pain and see me as a drug seeker!!! Ive done the no constipation thing no difference, although if im half starved with the runs it tends to go. Im told i have adhesions on my ascending bowel they have tried to remove or divide them but apparently, they can come back. Ive lost my job over all this had to sell my flat to try live off the equity to try get sorted and i need to find another job , but i cant do anything feeling like this pain , no sleep for months im white weak and running out of strength to fight for myself , foggy head due to low hormones etc etc. My gripe is that if they are adhesions you would think they would hurt all the time but they dont . But usually the pain goes and then the sweats start up again. Ive even tried just taking like an 1/8th of my tablet but it can still happen. If you get a chance or get any diagnosis id be grateful if you could find the time to share. I wish id have stayed on the injections and even would have bought them privately if id have known. It seems stupid they have a 6-month limit or any limit at all. Im in a worse position now in terms of bone health as i cant take any or i take very little anyway and suffer the pain for a bit just for the health of my bones and heart etc. Sorry for your situation too i hope you get someone who doesn't do this messing us around business. I've totally lost alot of faith and respect for many of them now. Soz for the rant , of and not even strong meds take the edge off !!