Endo symptoms, normal lap, zoladex working...?

[Bluehusky96]

Hello,Anyone had the above?

I basically have every textbook symptoms of endo including a family history of it. It's very severe and some days I end up wheelchair bound due to not being able to walk more than just around the house. I had a laproscopy which came back normal as well as blood tests and ultra sound and mri.

After an internal ultra sound they suspect I have adenomyosis. And my recent gyne put me on a 6month course of zoladex. He said that thr amount of pain im in and the symptoms would suggest its more than just adenomyosis... he then went on to say if the zoladez helps, it's likely to mean my pain is gyne related. Has anyone had this experience before ? Just wondered what happened at the zoladex follow up? I've found the zoladex to help hugely. I suffer for the first 10 days and a couple of days when I'm due. But can experience a good portion of the month pain free and be almost back to some normality which has been amazing.

Just want to know what peoples experiences are of the follow up?

Thanks

xxx

[ccfd9]

the pain does not relate to the amount of Endo. So they could have missed it. Have you tried nutritional advice? For many a gluten free diet helps, others a dairy free, check out endometriosis.co.uk for more help.

[Bluehusky96 in reply to ccfd9]

Hello,Yes I've heard that severity and amount aren't linked before, thank you for your comments :).

I've tried a Low FODMAP diet for 2 months and didn't notice any improvements with my pains unfortunately. Thank you for the suggestion x

[ccfd9 in reply to Bluehusky96]

no you would not, the FODMAP diet does not work with endometriosis. You need to be on an anti-inflammatory diet, and avoiding gluten and possibly bovine dairy.

[atealdeer]

Sorry you're in so much pain. It must be very frustrating not having a clear diagnosis but I'm glad you're finding the Zoladex so helpful. Can you clarify how long you've been on it and whether you're still getting your period while on it? I've beenon another GnRHa called Decapeptyl for a year, so although I only have an endometriosis diagnosis, I might be able to help a bit until someone more experienced comes along.

[Bluehusky96 in reply to atealdeer]

So I do not have a period, but that's because they have put me on the contraceptive patch, back to back (meaning I don't have a patch free, bleed week). I'm (over)due my third zoladex injection which I will get on the 3rd of Jan.Yes any advice or just sharing your experiences would be amazing 💞

[atealdeer in reply to Bluehusky96]

Hi, it's totally normal to not have a period on the injection because it stops your cycle and you're in a temporary medical menopause. It's also completely normal for the first month to be more painful than ever, then gradually get easier over the next two months to basically nothing (in comparison to regular endo pain levels). The first month everything goes into overdrive before shutting down, so that's why it's more painful. I had all this explained to me but it's common for people not to be warned about the initial increase in pain or not having periods! My experience was exactly like that, first month was absolute hell, second a slight improvement, third a lot better, then largely pain free, so when I got to my six month review I asked to continue and I was allowed to. At this point, they normally want you to take HRT alongside it to protect you from bone thinning.

I had started taking HRT alongside it right from my first injection because I didn't think I'd cope with the menopause symptoms. I did have a few at the start even with the HRT, so I'm glad I was taking it. I so still have some hot flushes even with it. My next four months were also great, but I had a bit of pain starting in the last couple of months before my recent diagnositc lap. This only found one spot of endo right where my pain was. They had expected it in other areas from my symptoms but think the injection had changed everything.

After my lap I've been offered the option to continue on the injection or have my ovaries removed. I think this is because I'm nearly 40 that they're so blasé about it. I had a further injection but have to have a DEXA scan to check bone density to see if I can continue for longer. At the moment, I'm hoping I can continue because of the vast improvement in my symptoms and quality of life from having no cycle.

Has everything been done under general gynae rather than BGSE endometriosis centre?

[635703]

zolodex helped my pain. Was put on list for a laparoscopy with excision of Endo, in my case. Pain was severe and chronic.

No signs of adeyominosis for me on mri and internal ultrasound. Seeing how I go. Possible bowel involvement….follow up from Oct lap is in August, LOL, I don’t think so!!! Will know more from that!

[Bluehusky96 in reply to 635703]

The follow up times are ridiculous! I had similar when they didn't find endo and then said they wanted to discharge me...alas they put me on zoladex and referred me to gastro and urology now due to symptoms being affected in those areas too.

Would you mind answering a few questions ? Please feel free to ignore any or all!

Did the excision help?

How long were you on zoladex for ?

Did they put you on zoladex pre or post op?

Thank you xx

[635703 in reply to Bluehusky96]

excision seems to have helped pain, bladder and bowel urgency incontinence.

Zolodex helped as Endo in pouch of Douglas was on mri but had gone by the time I had The Lap. On zolodex Aug 2021 - now. It was pre op and post op on zolodex.

Looking at ADHD and Autism assessments- 2 year wait for ADHD assessment!!! Oh the joy!!!