severity of endo

[shell131]

I had a lap investigation in october. the surgeon told me post op that she couldn’t remove any endo and she suggested GNRH injections. I had my follow up appointment with the consultant yesterday who thought that the surgeon had removed the endo, when i told her they hadn’t she said i needed a 2nd op to remove the endo that was removable but not all of it was. I’ll have to have the GNRH in lead up to the op to calm the endo down for the op.

My question is how do you find out whether the severity of your endo meets the threshold for a BSGE centre to do the op? The lap surgeon told me pre op she wasn’t an endo specialist and I may need to go to the nearest BSGE centre for removal of endo but the consultant yesterday didn’t mention it. I’ve attached my surgery notes just in case anyway can tell me if that indicates the severity!

[Chel91]

Ask to be referred to a BSGE specialist center. This more than warrants it.

[shell131 in reply to Chel91]

thank you - do you know if i need to ask the consultants to refer me or will i need to go back to my gp?

[Moon_maiden]

Does the consultant you saw specialise in Endo? Not all are registered as BSGE. It’s worth researching, ask the consultant more questions, otherwise definitely get a referral to a specialist. From what I can make out of the writing you seem to have significant Endo.

[shell131 in reply to Moon_maiden]

I don’t think so - from what i can tell online the hospital doesn’t have any specialism in endo - no clinics etc. I haven’t got a follow up appointment with the consultant, she’s writing to my gp to get them to do the gnrh shots and she doesn’t think they will be able to get me into the 2nd op for at least 6 months. I can’t understand most of the writing on the report and the consultant didn’t really explain it. I’ve got a life insurance policy which gives me access to a 2nd medical opinion from a specialist, i think i’ll book an appointment with them and see if that helps explain things and what they would suggest I do next. Thank you for replying 🥰

[Moon_maiden in reply to shell131]

Getting the second opinion is a great idea. If you see a consultant that does NHS as well they might add you to their list. They’ll be able to answer your questions at the very least.

How do you feel about the injections?

[shell131 in reply to Moon_maiden]

That would be amazing! I thought they would explain more during the appointment but I guess they only have a limited amount of time.

Really really nervous, I looked them up after the surgery and i’ve been reading some of the forum posts and it’s so daunting. I’m really not sure about taking them but the consultant suggested it would be a good way to see whether i will still have pain if I ended up considering a hysterectomy, they’ve suggested i try and go as long as possible without HRt add back but I’m worried

[Moon_maiden in reply to shell131]

I think my private consultation were about half an hour so you should have plenty of time.

Can only try and see, the max they are licensed for is six months. Zoladex didn’t help my pain but it does work for some. The hysterectomy got rid of some of the pain. I used Emla cream before each injection it numbs the area if you don’t like injections.

[shell131 in reply to Moon_maiden]

I will write down some questions before the appointment - that will help me to focus.

How did you find the side effects from the injections? Did you have any excision before your hysterectomy?

[Moon_maiden in reply to shell131]

Write down symptoms as well, anything, plus take your report and any letters, scan results you’ve got. You’ll find nd a private consultation much more informative.

I had one surgery before the hysterectomy and they removed some Endo then, more was taken out at hysterectomy. I had lots of fibroids as well.

The injections didn’t help me at all, think they made emotions worse and put up blood pressure. There are very positive postings as well though so it does help some, we are all different.

[shell131 in reply to Moon_maiden]

sorry i just realised i replied not using the link!

I keep thinking it’s worth a try isn’t it - it may work and the worst that can happen is the symptoms are really bad and i can take hrt if i need to - it’s only 6 months )remind me of this post if I come back complaining!)

how long was it between your surgery and your hysterectomy? How have you found things since?

thank you for the advice i really appreciate it x

[Moon_maiden in reply to shell131]

Even if you start it, doesn’t mean you have to continue. I should’ve stopped after two.

My first surgery was Feb 2020 and hysterectomy November 20. Although some pain went, I still get some, investigating colon at the moment. Since I’ve had gallbladder removed, bowel adhesions, some other adhesions and appendix, each time pain has got a bit easier. I’m not a good example as I ignored bad periods all of my life until it got too bad

[shell131]

I keep thinking it’s worth a try isn’t it - it may work and the worst that can happen is the symptoms are really bad and i can take hrt if i need to - it’s only 6 months )remind me of this post if I come back complaining!)

how long was it between your surgery and your hysterectomy? How have you found things since?

thank you for the advice i really appreciate it x

[Hinark]

shell131 hello

Have they done your laparoscopic and found Endometriosis and didn’t removed it because they were not endo specialist and suggested you for hormone therapy?

[shell131 in reply to Hinark]

Hi Hinark - yes the surgeon said they found endo and couldn’t do any excision and thought i should have gnrh injections. then I saw the consultant for follow up and she said i was going to have to have another op to get remove some of the endo but it wouldn’t be all of it.

She didn’t mention anything about referring me to the endo clinic that is in another hospital, I’ve looked at the gynaecology department online for my hospital and it doesn’t have anything about endo

[Hinark in reply to shell131]

It happened to me exactly same and now I am with another hospital and they trying to figure out why in the laparoscopic no treatment of endometriosis done.

I am actually in extreme pain because of the laparoscopic procedure I am left with scars and No treatment 😬😬

[shell131 in reply to Hinark]

It’s so frustrating isn’t it! I got the impression from the surgeon (although it was immediately post op and i’d just come round) she thought the endo was too deep to operate. The consultant thinks some can be operated on and should be, but I’m so unclear about what the benefit is to another operation if it doesn’t get all of the endo.

That’s awful - I’m sorry you’re in so much pain. How are you coping with it? What are the next steps for you?

[Hinark in reply to shell131]

shell131 honestly I was in shock when came out from OP and the consultant said it’s mild endo and will do hormone therapy only. But in next step MRI done and endo wasn’t that mild and now in a queue of getting another OP but the pain and suffering is too much no idea how to cope 😬😬

[Sunset-lady]

The first thing I'd do is ask for her scrawl to be written up properly as a report- you deserve that at the very least! Then you'll be able to see the extremity of the endo. Push for an MRI before agreeing to surgery. They need to know what they are dealing with. If you do go on zoladex then prepare yourself as it puts you in chemical menopause and without HRT it's brutal. To be honest if it's a 6 month waiting list I wouldn't go on zoladex. I'm on month 2 of it and hemorrhaging daily. Get a specialist involved and good luck x

[shell131 in reply to Sunset-lady]

I’ll go back and ask for the report to be written up - I got this from an access to medical records request so I’ve got something to take with me to the private consult.

aww no, that must suck - I’m sorry that’s happening for you - have you got much longer to be on it? The injections sound brutal! I’m definitely not looking forward to the prospect of taking them at all let alone for 6 months!

[Sunset-lady]

I'm on it as a last resort lovely x there's nothing else they can give me unfortunately 💔. The endometriosis has fused it together so I can't have hysterectomy.

[shell131 in reply to Sunset-lady]

Oh no this really is a horrible disease - I really hope you start to feel better with the injections x