Chronic endometriosis pain and struggling... - Endometriosis UK

Endometriosis UK
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Chronic endometriosis pain and struggling to wait for laparoscopy as the waiting list is so long!

BlueRio
BlueRio

This is currently my situation and I wanted to share as I would love some opinions off people who have experienced similar.

I have suspected endometriosis and have done for the past year. I’ve been put on the laparoscopy surgery list since September and I am awaiting a date for surgery. On Monday morning i had chronic pain all in my lower back, and my abdomen, to the point where I couldn’t move. After calling 111, they sent me an ambulance. I went to A&E and was assessed, to be sent to the surgical assessment ward. They monitored my pain and gave me morphine. After realising how much pain I was in I was admitted to a hospital ward, in which I am still in at the moment. I am under the ‘pain management team’ and on really strong doses of morphine, been on Tramadol and others I can’t pronounce etc. I am still in the exact same agony as Monday and it’s worrying me so much. This is the worst ‘flare up’ I’ve ever had!!

A gyneo doctor came to talk to me thursday morning and after assessing my situation, the treatment I’ve had in the past, hasn’t helped. I am actually no where near close to my surgery date, so they offered me 2 options.

1st was to stay under the pain management team until March preferably in hospital, but I wanted to come out and go home because I have a very young daughter, and asked to take my pain medication at home! They have allowed me to, but have told me I need to come back if I can’t cope! (surgery is supposed to be around March time because the waiting list is so long!!) OR 2nd, to have the early menopause injection, which will bring on menopause to help the pain subside...

I’ve suffered 2 miscarriages this year and the thought of me being 22 and having early menopause is the scariest thing I’ve ever heard. I really am against this option as even if this can be reversed, my Endometriosis has ruined my fertility as it as and I am really worried this is going to make my fertility worse.

Really unsure as to what I should do as my pain is so chronic I can barely move! I have a supportive family who can help look after my daughter, but I am really worried about how my quality of life for the next 3 months...

1 Reply
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Hi, so sorry you are going through this, and so young too.

I went on prostap 1 month depot injection for six months at 27 prior to surgery. I was frightened, found the thought of being in menopause at that age bizarre, and worried about fertility. Then after my surgery again for another 6 months.

The symptoms I got were insomnia and some sweating mainly and my periods stopped. The second time it made me feel a bit down so they stopped it after 3 months and I was fine in a few weeks. Note if you are on the 3 month depot it will take longer to dissolve out of your system. I haven't been on any of the other injectables but you can find out more info on endo treatments etc here endo-resolved.com

Stopping your periods stops the oestrogen stimulus that encourages endometriosis to grow. It is likely it could also shrink the endo you've already got so it is really worth a shot. Do your research, ask other ladies on here about their experiences with specific treatments before you decide. Personally it really helped me, it was tough psychologically thinking of being in menopause but physically it made me feel a lot better and I believe helped me conceive my son (I stopped it about 6months before trying to conceive).

I can empathise with long waiting list, it is 12-18 months here depending on severity.

Take all the support you can get from family, take the painkillers, take time off if you can. And 6 months of injectables would reduce growth prior to surgery and prevent regrowth after so it could really help. Just weigh everything up. x

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