Obsessively researching: Hi - apologies in... - Endometriosis UK

Endometriosis UK

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Obsessively researching


Hi - apologies in advance this is a long post - it's my first and I seem to have blurted out everything,

I was taken in to hospital with severe abdominal pains on my lower right side 6 weeks a go, after an ultrasound didn't show anything wrong with my ovaries or gall bladder they assumed it was my appendix. I ended up having an emergency laparotomy after they saw my insides were filled with black liquid so they assumed my bowel had perforated. As you might have guessed it wasn't my bowel but a large chocolate cyst that had ruptured. They called in their gynae colleagues and drained other cysts that were on both ovaries and removed my appendix anyway. I had let them know we had been ttc for 6 months when I first went in to the hospital as there was a chance I might be pregnant and was due on anytime. I came on right before I went in for my transvaginal ultrasound (eek - very bad timing). Anyway, after the surgery I was all fuzzy with morphine while they explained what happened and that they were going to put me on to Decapaptyl injections for 6 months to let my ovaries heal. So whilst healing and struggling with hot flushes and night sweats I started researching what all of this means. Fast forward five weeks and I received a copy of the letter requesting a gynae consultant appointment (for four months time) that also mentions the histology on the appendix showed there was endometriosis there too. Which gave me even more to research and the ability to make more assumptions about the severity.

My every waking moment is now filled with trawling through more forum threads (thank you all for sharing so much!) and more research papers, it's even invading my thoughts at work. I'm grateful that I haven't suffered the pain that I've read so many women have to suffer through for years, or the struggle to get diagnosed in the first place, but at the same time I'm terrified I'm never going to be able to have children.

How have you all managed to cope with the unknown while on waiting lists??


10 Replies

Hi this is so me I'm newly diagnosed stage 4 endo after lap I'm January to drain 8cm chocolate cyst. My partner is going mad that my every waking moment is researching the internet to find out my choices. Had a follow up appt on 14th march with gynecologist and he advised a hysterectomy which I am Devastated about. Now awaiting referral appointment to endo specialist. I reckon it's going to be 8 months of waiting for this op and I haven't the time I want to hurry it up and start IVF as I feel that is now my only hope at all of having more children. The internet has scared me so I should stop reading and reading as each case is individual. It's a waiting game as that many women have it the endo specialist has a list as long as his arm for operations. I've enquired about private but been told it will be £6000 to £8000 and I just haven't got that kind of money. All the while I'm worried my chocolate cyst comes back. I'm due to start my period end of week so going on cerazette for the time being so endo is stopped until operation. I then plan on coming off it after op and going to see fertility specialist. This is all on the based I don't have to have e a hysterectomy . It's taking over my life

I'm so sorry the gynaecologist suggested hysterectomy, I hope the endo specialist will have better news for you. My husband is the same, he's started telling me off every time he sees what I'm doing. His attitude is to wait and see what the experts say. However, from what I've read it's unlikely the gynaecologist that I'll be seeing is an expert and that I'll then have to wait several more months to see an endo specialist, before joining yet another waiting list for another surgery. From what I've read, it sounds like going private for the consultant appointment (c.£200) and then getting put on the NHS surgery waiting list at least cuts out some of the waiting time without costing the earth.

Yes my follow up was with a gynaecologist I just wish he had put it straight to the endo specialist as I now need to wait again which can take up to three months!! My partner is the same he keeps saying stop jumping to conclusions and see what the specialist says. I feel like I'm going mad I just want it over and done with. I even rang the specialists secretary to see if I could had a private consultation at a private hospital they do clinics from and she said well if the endo is on your bowel or bladder it can only be done at the NHS hospital and there is specialist equipment there to deal with it so no queue jumping just have to wait. Only pain I get is around period and it is excruciating so no I have asked go for strong pain killers and also transdemic acid to stem the flow. I think i had it years at least since I had my little boy and it's go worse. They cyst only came about from a miscarriage I'm July last year which I swear the endo had something to do with

I'm sorry about your mc. My pain is only around my period too. I didn't think private clinics would say no to an appointment, but I have no idea how going private works... another thing to add to my research.

People can and do get pregnant with endo it's a much lesser chance but it can happen. I don't want to chance trying now until after my surgery to hopefully get rid I can't wait to get it done though it's my only hope. Good luck with it all let me know when you get your date for op and we can compare timescales

If you have chocolate cyst I think that automatically means stage 4 as its the most severe form. They will have to go in and excise it or ablation all depends on your specialist.

Ah I hadn't seen anywhere that just a chocolate cyst meant stage 4. That does make it tempting to pay to see a consultant at the endo clinic to at least skip a few months of waiting.

Can you not consider birth control to stop it growing until the apt. I'm having to do that as I can't cope with my periods at the moment having 1 or two days off work a month luckily I work from home so I just make the time up

I'm on Decapeptyl injections for 6 months which have stopped my periods. My biggest concern is ttc as I'm 31 now and with all the delays and surgery I can see time slipping away before we even get to start IVF.

You will be fine I am 37 so time is ticking each day. At least you should have it at bay for now until they do an op to sort it. No one had ever mentioned it to me before this cyst was discovered and I'd been to gp several times with heavy painful periods. I've even fainted twice cos of them second time had to go to a and e as banged my nose off our shower tray and there was blood everywhere!! I'm hoping and praying they can keep it all in tact so I can have IVF it's gunna cost an arm and leg but we both work full time so will have to save for it. I'll be 38 before I get it though but my manager has just had a baby and she is 40 this year so age is just a number

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