Hi

So im new to all this, so sorry if anything is abit random haha. I was diagnosed with endo back in june and tbh a million questions have gone through my head without getting answers, after my op the doctor came and told me they found endo on my pelvis, tubes, and ovaries and this is where the pain is coming from, they also found a cyst (iv had many over the last year) but then his next comment was u can find info about it on a website and also handed me a booklet and left. Well the booklet put the fear of god into me with the talk of having problems conceiving and there being no cure for this.

I guess im just looking for support, experiences and abit more info on endo and how it works if that makes sense

thanks

8 Replies

oldestnewest
  • Hiya I soo wish I could help,unfortunately,your experience sounds just like mine.diagnosed July. Various other probs related to endo (bladder,bowel & infertility) it's early days I guess.burying my head in sand didn't work but at the same time reading everything I could only put the fear of god in me.all health care people been lovely but serious lack of support/communication.i have joined endometriosis uk & am hoping to join a support group too.take each day at a time,good & bad. Cry when need to (I do often now never did before) but remember life goes on. Good luck :-)

  • I know what you mean, i was never an emotional person but this just seems like im living my life around this now, the pains and the negative problems that comes with it, hope all goes well for u

  • There is lots of information and support on here and on Facebook endometropolis site they have some fantastic people on there including a doctor and researcher.

    Good luck. X

  • Thank you i will have a look around

  • Hello Kay.

    Welcome to Health Unlocked.

    I'm sorry to hear that nothing much has changed in the past 20 years. When I was diagnosed I was told almost nothing about endometriosis - just that it had been found & that I was going on hormone treatment to stop my periods.

    When I left the hospital all I had was a photocopied article with the address of a UK charity called The National Endometriosis Society - aka as Endometriosis UK. The Ward Sister had found it in a magazine & gave it to me on my way out!

    it's scary when you read websites about endometriosis - and because there's so much information out there you don't know what to believe.

    Sites such as Endometriosis UK offer up-to-date information as well as offering advice and support. The Support Groups & Helpline help sort out the wheat from the chaff.

    Just because one woman suffers from horrendous pain doesn't mean that another woman will. Women with endometriosis can get pregnant & have healthy babies. It all depends if your ovaries & Fallopian tubes are effected. If you have healthy ovaries & tubes; then there's no reason why you shouldn't get pregnant. There is new research into why some women with endo can't conceive, which is to do with the immune system - but unless you're trying for a baby right now, that's something to think of in the future.

    There is an awful amount of disinformation out there as well - so my advice is to head to websites where you know that the doctors involved are endometriosis specialists. I can recommend a couple if you'd like?!?

    There are some really good books available as well - and if you'd like a list of my favourites let me know.

    I have a website - but I must update my links!!! However I hope it will help you realise you're not alone out there?

    Please feel free to PM me any time?

    Good luck out there!!

    A x

    antonia-boyton.net

  • Thank you, I was put on a regular contraceptive pill, which didnt stop my periods so achieved nothing really except made me come on more than normal :@ The doctor who diagnosed me told me he would be putting me on either a hormone that would stop my periods due to my body going into a phantom pregnancy or a hormone to send my body into menopause but told me to have a think which one would suit me better and he would get back to me, then next thing i know a different doctors hands me the normal pill which can i add I took a break every month in to have a period so again did nothing and sent me on my way which was horrible because i had a 1000 questions like can i have kids? what was everything like in there?

    The pain i have is horrible and with being at university it is hard to concentrate before the op i missed so much uni because i was just in too much pain luckily i passed but it knocks u down

    I just feel like II need to sit down with someone and have every question i have answered and have a proper treatment that atleast eases the pain

  • Hi there - Endometriosis UK has an excellent helpline. there you can talk to someone & she should be able to answer all questions. They also have leaflets about various hormone treatments etc. Give them a call!

    I know it's hard & confusing. But there are some oldies out there, like me, who have seen it all & done it all - and we are still here fighting our battles. It's not all doom and gloom, I promise you!

    Take care ☺️

  • Looking at some posts, would it be worth while keeping a diary of things~? as im due to see a gynaecologist next month for something different but maybe he can help? if so what should i keep in this diary

You may also like...