It's an endometriosis one

[FirmPeachDog]

Brief history - symptoms since the age of thirteen, finally got a diagnosis in my late thirties when it was basically everywhere. Had hysterectomy/oophorectomy and excision surgery at that point as there was little else they could do - I had hydrosalpinx in my fallopian tubes, kissing ovaries, obliterated POD, and adenomyosis. I had large nodules deep in the rectal wall and in my urinary tract (bladder and ureter). Early menopause was difficult but pain wise things were OK for a few years, certainly better than they had been, but then in mid 2022 it came back. (FWIW this was done at a BSGE centre in London, with a specialist team).

MRI has confirmed that I've got DIE in my rectum again, about the size of a 50p, growing about a centimeter into the bowel wall, plus a second nodule about the size of a marble also on the bowel. It seems fairly certain I've also developed interstitial cystitis. I've been able to access help privately, thank god, as all the NHS could offer me was an appointment at the wrong clinic after a 19 month wait. It's currently being managed (sort of) with medication. I've talked about further surgery with the specialist but there's no guarantee it would help and it could make things worse because it would be a second major bowel surgery and would leave me with further scarring.

I am just so tired of the constant cystitis, of crying on the toilet because the pain in my bowel is so bad (I've got a lot of scar tissue as well as the endo), of being flaky and having to cancel things because I can't be far away from a bathroom/don't have the energy/am in too much pain, of having to deal with surgical menopause on top (which has made me overweight and forgetful). I take medication every day for pain, plus a different one for breakthrough pain, plus hormones for the surgical menopause. Two different laxatives which often don't work. Sex is really difficult, working is really difficult. I feel just so broken and miserable and the thought that this is how the rest of my life will be is so depressing. I've seen a pelvic physio, a dietician and had 6 months of CBT.

Really just wanted to see if anyone else is in the same boat, I suppose, and how you're dealing with it.

Please no comments telling me it can be fixed by drinking water and eating a banana 😆

I’m not in the same boat as you but just wanted to some you some support as I know full well how debilitating this is. I have been through the same surgery also with widespread scar tissue particularly on ureter and bladder. I thank my lucky stars that, up to now, it hasn’t returned. I just wondered about your hormone treatment for surgical menopause (which I know is hell) and whether you had considered stopping this to trial if it helps? I was told that oestrogen feeds endometriosis and, although I do now have oestrogen only hrt myself, I was prescribed synthetic hormones for two years after surgery to prevent recurrence. Also, have you been prescribed vaginal pessary oestrogen? These help me massively and are topical so shouldn’t case any risk.

Can you contact the BSGE team where your previous surgery was performed?.

I've cut the oestrogen dose and increased the progesterone (with help from the meno specialist) and the plan is to keep decreasing the oestrogen over time, but at the moment with a lower oestrogen dose than I'm currently on I can't sleep. Yes also to vaginal oestrogen, have been on that since 12 months post op. It's such a bloody minefield.

I'm seeing the consultant in charge of that team privately (have been very fortunate in that regard, and because it's private I get a decent length appointment whenever I need one). He has been really helpful.

Am glad to read he has been helpful to you. Are you going to have further appointments with him?

Yes, I'm seeing him regularly to monitor disease progression and I've also got a neurogastroenterologist for pain management. I haven't been left to try and manage it on my own. It has got better. When I first started seeing him I was virtually housebound because the bowel symptoms were so bad and that is more under control now, it's just accepting that this may be as good as it gets. Endo is such a stupid disease.