Help! I’m in tatters!

[Sarken0]

I don’t know where to start!

I’ve struggled with crippling period pain for years to the point of passing out. It’s like labour.

18mths ago an MRI diagnosed me with deep infiltrating endo, into the rectum, fibroids, chocolate cysts and adenomyosis.

In recent months I’m struggling daily with discomfort, pain, and crippling chronic fatigue. I also think I’m perimenopausal.

Finally got to see a consultant last week for the first time since my scan. She agreed a hysterectomy but explained I’m likely to need a bowel surgeon and stoma for 4-6mths after surgery in case they injure my bowel. She also said from that there’s a 10% chance of needing a stoma for life. The waiting list is 18mths so I have time to decide if to risk this.

In the meantime I said I am adversed to the menopause injections as I dread the idea of the side effects so she offered a red drug called Ryeqo that’s only just been licensed. Having read the common side affects and risks I’m now reluctant to try it and wonder if I should’ve asked for the injections.

I’m mentally and physically in bits. I don’t know if to decline the hysterectomy and try to manage, but don’t know where to start drug wise! I’ve always been a high functioning person but feel debilitated, and now coping mentally or physically. The fatigue makes me struggle with life, and she also told me I can’t take the HRT the doctor prescribed as it’ll feed the endo!

Any advice from any veterans out there on your experiences would really help! 🙏🏻

[CitizenErased]

I'm so sorry to hear you're struggling hun! I feel your pain.

Has your doc offered you the minipill (progestin only pill)? It's true that the combined pill can feed endo, as endo feeds off oestrogen, but the progestin only pill doesn't have oestrogen in it, so it doesn't drive the endo.

I've been on this pill for several months now. It took three months at least to settle down (had really low mood and constant bleeding at first) but now it has stopped my periods entirely, so it's helped the worst of my pain and the worst of my bloating too. Still get some symptoms, but they don't stop me going about my day as much!

I hope you start to feel better soon 💜

[Sarken0 in reply to CitizenErased]

Hi, the pill has never agreed with me so I tried the mirena coil and ended up having it removed at hospital because I was bleeding so much! Thank you for the info and sharing your experience. It’s definitely given me something to think about again and reconsider!

[Scoutybob]

I completely get where you're coming from and pretty similar timelines and situation.

I was diagnosed just over a year ago and an MRI showed Deep infiltrating stage 4 with significant bowel involvement, bilateral endometriomas and hydrosalpinx / tube involvement, kissing ovaries, diffuse adeno and an adenomyoma.

I was put on the urgent surgery list in June but not being told how long it is, but at least 18 months I believe.

I'm also heading towards perimenopause I think (coming up to 42) and currently being advised to do conservative surgery first (removal of all adhesions and endo, probably losing both tubes and one ovary and sorting the bowel with chance of stoma) and if that doesn't work then full pelvic clearance.

I'm in complete confusion. My pain is at it's peak from a few days after my period until ovulation and then eases but during that time, I can barely sleep (maybe managing 2-3 hours per night) and generally not functioning at all. Pressure, extreme pain and full exhuastion.

I'm terrified of the surgery but also scared of going too conservative and having to go back in and be on a wait list a 2nd time, and no-one has mentioned the possibility of some of the pain being from adeno and that's being ignored! This month I was bordering a breakdown, yet, the same as you I keep thinking 'maybe I could cope if....'

I feel so sceptical of taking more drugs or what I could do help and it feels like I've been left in the ether in the meantime. The consultants secretary gave me 3 booking line numbers to find out an idea of the waitlist and I've tried every number for over a week and they all ring out.

The helplessness is real!

I wish I could offer more advice, but I suppose I'm just offering empathy from someone in a similar situation. I honestly think it makes us believe we're going a bit crazy.

[Sarken0 in reply to Scoutybob]

Thanks for replying. I feel like I’ve just read about myself. I’m feeling exactly everything you have said, and the daily issues seem to have come on quickly. Before it was mainly just around my periods but now the struggle is daily. I just don’t know how we’re supposed to carry on. I’m a full time teacher and keep asking myself how long can this continue, and the fact it’s invisible to others is worse! The consultant said a full hysterectomy so they can remove my adeno. We didn’t even discuss more conservative surgery. Although she did say she’d try and keep one of my ovaries if it’s not too damaged. It’s the bowel part that is worrying me. I’m 45 and she did say that it can get better after menopause, and that medication could keep me going until then but it’s unbearable. Like you my sleep is difficult and I suffer with hip and lower back pain constantly through the night. I’m even wondering if it’s growing in my hip! The struggle is real. I really feel for you and hear everything you have said!

[Scoutybob in reply to Sarken0]

My lower back pain was my only symptom for a long time and that gets really bad and the MRI hasn't showed endo on the bladder yet but the pressure I'm feeling is changing there and I have a gut feel it's moving to there as well. My consultant said on my letter following my appointment that hysterectomy was one of my options but in the meeting it was definitely 'do nothing, have medication or conservative surgery' followed by 'full pelvic clearance' if not. So the letter contradicts it which is frustrating. Like you, I'm most worried by the bowel and I would say that's my worst symptoms. I'm tempted to get a private consultation just to see if the advice for surgical route is the same.

Being a teacher with this must be impossible. I'm so lucky to work from home as a recruiter with flexi hours and a very understanding company so if I did have an issue, it would be fine. However, because I can work from home and move my hours around and/or sleep in a bit in the morning if my night has been horrific then I can. This makes the world of difference but still tough and being by yourself every day means that your mood can get low and it's hard not to concentrate on the pain and fatigue when there's no-one else to be talking to. But it's meant that I can carry on working full time which is fantastic. But my work is so reliant on commission and I'm really driven and I do feel that this is limiting me all the time.

I just don't know how we're supposed to manage to be honest. It's hard to remain positive. Especially because we don't even know if surgery will work!

[Kiz01]

Hi I’m so sorry to hear what you are going through I’m in a similar situation only they’ve already tried a hysterectomy but had not realised how badly my bowel was stuck to my womb, on a waiting list for similar surgery was on the deca injections now on Dimetrum a Dienogest and found it to be best thing I’ve taken, it takes out so much inflammation I still get flare up once in a while and have scar tissue pain but not had a bleed. Recommended it if you’re able to take it 💛

[Sarken0 in reply to Kiz01]

Thanks for replying. These sound amazing? Are they the injections that bring on menopause? If so how have you found side effects? Did they complete the hysterectomy when they saw the bowel? What are the next steps for you? I really feel your pain….literally!

[Kiz01]

I hadn’t realised how badly the side effects were with decaptyle injections until I came off them. I started them one month before first hysterectomy attempt (Oct 2022) stopped Aug 2024 went on to Dienogest thanks to an amazing endometriosis gyne specialist who told me not all health boards are keen…don’t let the Doctors fob you off it’s expensive as I was told that it isn’t by a pharmacist. They had to stop surgery after nearly three hours, called in a bowel surgeon who said it was too risky. I had one ovary and tube removed, most of other ovary and chocolate cyst, pre cancer cells that were medium risk blitzed which at the time was my biggest concern. Going back to Endo specialist though and after another MRI they’ve said definitive surgery is recommended. So got to see if it’s in my bowel as well as on the surface. The tablets have really helped me! I wish you all the luck in the world that you get some form of cure and breakaway from endometriosis. Xx