Private Consultation - pill and gastro re... - Endometriosis UK

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Private Consultation - pill and gastro referral

Hdavies profile image
7 Replies

Hello. I was wondering if anyone has had a similar experience and any advice would be appreciated...

I had a private consultation with a gynae on Wednesday as the NHS waiting list in my area is months long. He only asked about my periods (flow, length, pain etc.) and did not really ask about any other symptoms that also cause me concern. He suggested trying Cerelle and has prescribed mebeverine and peppermint pills as I'm having bowel issues. Also referring me to gastro as I am experiencing constipation, weight loss and difficulty eating, especially certain foods.

I don't really like the idea of the pill and reluctantly agreed however it doesn't feel like the right thing to do. I'm worried about side effects and I also don't want to mask any issues without knowing what the actual cause is. Am I being silly? My family feel I should do what he suggests as 'you don't know until you try'.

Please let me know if you have similar or different experiences x

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Amnc profile image
Amnc

Hi there,

I am also under the care of both gynae and gastro as I too have symptoms in both areas. I very recently had my lap and endometriosis was present, as I can suspected all along. I would advise you to trust your instincts. If you don't like the idea of the pill, say so. If you want a lap, say so. It is only then that you will know for sure and then you can make your decisions and choices armed with all the evidence. All the best xx

Hdavies profile image
Hdavies in reply to Amnc

Thanks for your reply. I hope you're ok and are recovering well. Was your lap purely investigative? Thank you, I don't know what it is but I'd rather know exactly what's going on. Wishing you all the best too xx

Heloo85 profile image
Heloo85

Unfortunately endometriosis has no cure. It does however have the types of treatment. * The pill *Chemical menopause & 3* Surgery. Surgery always comes with the most risks. Most Drs are right to be conservative at first. If in the future you do have/get a lap, and ablation or excision, you would have to use the others along side as surgery doesnt cure. I agree with your family. Try it and if it helps, great. If it doesnt, try something else! So far ive tried:- Zoladex, progesterone only, surgery, combination pill, zoladex again. Unfortunately still have endo. But i would never have known whether it worked or not if i didnt try!

Hdavies profile image
Hdavies in reply to Heloo85

Thanks for your reply. I completely understand why the Dr has said to try the pill etc. first, I'd just kind of rather know what's actually going on.

What were your experiences with the different treatments? If you don't mind me asking x

Heloo85 profile image
Heloo85 in reply to Hdavies

I do completely understand you wanting to know, but unfortunately only surgery can give definitive answers. And well all surgery comes with immediate risks as well as long term risk (adhesion formation).

My father nearly died after an adhesion strangulated his bowel 10 years post abdominal surgery. The risk is real.

Unfortunately all treatments upto now have failed for me. But thats not to say they will for you! My first Zoladex i was given without HRT. It was hard. I stuck it out for 4 months before throwing towel in, it didnt help. (But my fallopian tube was wrapped around my bowel so wasnt expected too.) Progesterone just caused me constant breakthrough bleeding, my endo spread from left to right. I didnt even get to recover from surgery before symptoms were back. Literally 1 month post surgery my endo was back. Combination caused months long breakthrough bleeding which worsened the situation. Now im on Zoladex plus HRT. Its manageable but not helping. Especially the constipation and impactions. Im currently on my 4th impaction this year! My GP hasnt got a clue what to do and my Gynae is reluctant to opperate again anytime soon as hes scared.

But dont let that put you off! Ive clearly been very unlucky. Thats not to say any of those treatments wont work for you. Try the pill and take it from there! If it doesnt work then try the others! Best of luck xx

Heloo85 profile image
Heloo85 in reply to Hdavies

P.s severe endometriosis doesnt respond to hormone treatments. Very aggressive endometriosis can be made worse by progesterone. What your Dr is doing is seeing how you respond to hormones before going in surgically! Which is the most sensible route to take. A lot of women on here feel theyre being 'fobbed off' when in fact, its a diagnostic experiment .. Good luck xx

VioletCoffee profile image
VioletCoffee

Hi!

I’ve just been referred to gastro myself after my laparoscopy didn’t find anything. I still do believe I have endometriosis on my bowel but I guess we’ll see if gastro can be more helpful in managing my symptoms because birth control has not been helpful for me at all.

The only thing I’d say with what you’re experiencing right now is that they made me try every birth control until they started sending me for scans and referring me for a lap. I think it’s because it’s the least invasive way, BUT and I can’t stress this enough, birth control does not work for everyone! Some birth controls have even made me symptoms worse, like the coil and implant (which I’m on now, but they still don’t want to remove as a 6 month trial is apparently not long enough).

If you’re really against the pill, tell them that. But in terms of contraception, it’s the least invasive as you can just stop taking it if you don’t get on with it or the symptoms it gives you, unlike the coil and implant which have to be removed, and the depo injection which will stay in your system for a few months (I believe).

It is very difficult to try to figure out what’s best to do for the best. I’m sending so many hugs to you as I have been through this these past couple of years! If you need to talk, about bowel stuff too, I’m always here! xx

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