Endometriosis UK
36,701 members32,462 posts

Post op results advice.

Hi there,

I'm hoping for some help and advice about my recent post op.

I had my diagnostic laprosopy after 7 years of pain which was just under six weeks ago. I had this under general gyne and I had some endometriosis tissue and adhesions in my pouch of Douglas everywhere else looked fine. Nothing was removed. I have a history of 7cm + cyts

Today I had my post op with my gyno Which she confirmed endometriosis and gave me only two options one is the mirena coil the other is the pill. I expressed strongly I don't agree with hormones the pill in the past has made me so depressed, even the thought of it makes me feel anxious!

I am to speak with my gp about which one I want, she said it's either that or I mange my pain with pain killers (which do not work anymore) my pain had progressed from around my cycle to every single day. I am to return to gyno in six months

Can anyone recommend a pill before I see my GP?

no medical professional I've seen seems to get it! Why don't they get how horrendously painful this is!

Thanks in advance X

10 Replies
oldestnewest

Please go back to your GP and ask for a referral to a bsge centre (if you google this there is a list). You have far more options than this but you need specialist help.

Reply

Would I be eligible for such referral? My gyno kept saying "it's only a little bit" I asked why it wasn't removed this was the response "I don't know I wasn't there" I felt she was kind of implying that it wasn't too bad, and yes she's correct I'm not covered in the stuff but my pain is unbelievable it hasn't helped that I've seen a different gynaecologist for every single appointment. She said they've probably left it because there isn't too much and it's only in that area. Even after a diagnosis I still feel like I'm fighting for my care.

1 like
Reply

yes you are eligible, anyone can ask to be referred to a bsge centre. Please see your GP and ask to be referred on and don't let this gynae put you off.

Reply

Ok thank you so much for your reply I really appreciate it. I will speak to my GP about this. Thank you.

Reply

If it is in your pouch of douglas, it could be on the bowel, and could be rectovaginal endo which general gynae aren't supposed to treat. And TBH from what you've said, you haven't received the care that you need. Although bsge centres only treat women with confirmed severe endo, anyone can ask to be seen there and then it's up to the consultant there to make a decision about whether they need to treat you or refer you to their general gynae. If you've got more questions it is worth ringing the bsge centre that you want to be referred to and talking to them - I did this prior to referral and found it helpful.

1 like
Reply

From what I've read about endo, the amount that is visible doesn't necessarily correlate with the pain it causes.

Reply

You can find bsge centres here

bsge.org.uk/centre/

The amount found doesn't correlate to the pain and there are more options than just the pill or coil so please get your gp to refer you. You may need to take all the details with you as many GPS have never heard of these clinics.

1 like
Reply

You need a Endometriosis specialist. Second opinion, which you are entitled too. Hormones are not a cure. Excision surgery is what you need. Look for Endo centre near you. Or join Nancy Nook on Facebook to find a surgeon on there files. Good luck, sorry it's so hard to get help. I am having to fight to get treatment too.

1 like
Reply

Hi Liamarie, with this disease I've found that you HAVE to become your own advocate. I had the same- a diagnostic lap back in October where they fixed some problems (e.g. Cysts etc) and mentioned that they'd found some endometriosis. The surgeon was just a general gynaecologist so I assume that's why he didn't remove it. I went back and forth to my gp who was very blasé about it. My GP refused to refer me as she implied that my symptoms were all in my head. They hadn't even updated my records and at first refused to believe that I even had Endometriosis!! Long story short I got really really angry. My GP wanted to put me on the pill but I want to have a family. This motivated me to take control...I did loads of research and decided that even though I probably had minimal/mild Endometriosis that I am still entitled to treatment. I made an appointment to a specialist centre and seen a renowned specialist. My GP begrudgingly wrote a referral (I went private) and the specialist said he was used to GPs being skeptical and haphazard in their approach. I felt totally validated and believed. I'm due to have excision surgery on Monday.

As everyone else has commented, sounds as though you need surgical removal of the endometriosis. Don't be fobbed off. Push. Push. Push. Demand a referral!!!

Reply

Thank you to every one of you that has given me some advice and suggestions on this.. I fought and fought for so long and I'm so tired of it.. honestly after yesterday I felt like like giving up and just accepting that I'm going to be in pain for the rest of my life, you've given me back some fight. Thanks a lot ladies X

Reply

You may also like...