Endo - deep infiltrating, Adeno & cysts

[hoping2016]

Looking for some advice on my situation. I have stage 3/4 endo, adenomyosis and 2 cysts (chocolate) 7cm and 4cm.

So I started getting stomach cramps during my period and for one week after my period in December. Also getting heartburn and urge to pass stools when nothing to pass.
Roll forward to February (first period post covid) and I was in agony (think Labour pain), being sick, sweating etc. Went to a&e, morphine and codeine didn't touch the pain, finally diclofenac pessary sorted it out! Also getting shoulder pain at the time.
March period was okish stomach cramps but manageable with ibroprofen etc.

So the first gynaecologist has said a hysterectomy would be best.

The second has said to remove cysts and endo and see what happens (leaving adenomyosis).
Also inserting merina coil.

Does anyone have any experiences to share on this? I'm really torn as to what to do. The doctors also mentioned just doing nothing or just trying merina on its on.
Feeling very scared and confused on next help, I'd appreciate some advice pls 🙏 🙂

*steps not help

I had this, went for the hysterectomy, endo removal, cyst removal, but left one ovary so that the hormonal issues weren’t too bad!
It’s major surgery, but it definitely improved my symptoms
It also depends on your age and I’df you want children in the future

Thank you thats helpful. Thankfully my family is complete. I can't understand how they say it can be left and just monitored as surely it'll spread more? my ovaries are already stick together.
The symptoms aren't horrific, but the fatigue it quite bad. I'm assuming the Feb episode was a burst cyst but the gynaecologists can't conform this for sure!!

What options were you given? I don't know what to go for....we're you symptoms bad ?

Are you under the care of an endometriosis tertiary centre? You qualify for this with deep endo. General gynaes don’t have a clue IME. Excision is the gold standard for endo, hormonal ‘suppression’ merely masks symptoms leaving disease to spread further. Hysterectomy is also not a cure for endo, but I don’t have experience of adeno.

You may like to join Nancy’s Nook Endometriosis Education on Facebook. Endometriosis Guidance and Information Resource UK is another good group.

Yes, I ended up collapsing! Then they took me seriously.
I started off with an exploratory op, where they found and treated the endo and cysts. It helped with the symptoms for about 4 months. Then I had another op, ablation, apparently to reduce pain and uterine bleeding. It reduced the bleeding but hugely worsened the pain!( that’s how they decided it was adenomyosis too!). I then had two options.

1. medically induced menopause- I refused as I had three children under the age of 9 at that point, and didn’t think I could cope with the symptoms.
2. hysterectomy- I went with that, we knew one ovary was already very damaged and would be removed, and they’d try to save the other.

I have endo and adenomyosis.

I'm on waiting list for hysterectomy.

I've tried the mirena - both times bleed daily until they came out inside huge clots.

I've been on northisterone daily for over a year now and will take it until my womb is removed. Ablation wouldn't cure the adenomyosis and as that's my biggest issue we decided not to try it and end up back at square 1.

I have deep infiltrating endometriosis and adenomyosis and am waiting for a total hysterectomy with unilateral ovary removal. You seem to have a range of gynae opinions but is one of them a specialist endometriosis gynae? If not, the British Society for Gynaecological Endoscopy holds a list of accredited endometriosis centres so there may be one in your area that you can be referred to. I’m surprised with the do nothing suggestion especially with stage 4; I’ve been on the waiting list for 12 months (nhs backlog) and one of my endometriomas has grown in that time. I hope you can get some consistent advice; my first gynae almost wrote it off as peri menopause but the specialist endo gynae suggested a hysterectomy right away.

Thank you ladies. 😊

Does Merina coil stop further spread or only help with symptoms?

If only with symptoms then the disease will spread and do much more damage, so maybe best to go for cysts/endo removal or hysterectomy. Don't know which, he did say my hormones will drop off if they haven't already as I'm 44 in August so hoping things don't get worse with the adeno. Not sure if this a long shot.... 🤔 He said could do a second op and remove uterus if needed. Any further thoughts ?

Yes I'm under the care of a specialist @ GpodspeedJune. Thank you