advice please - feeling really down!!! - Endometriosis UK

Endometriosis UK
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advice please - feeling really down!!!

I have just had a laproscopy surgery and was told i have endometriosis which they state they removed. I was unaware i had this until the surgery as my own doctor kept palming it off stating i had scar tissue pain from a previous operation.

I have also been diagnosed with PCOS (Polycystic ovary syndrome) since i was 16 years old. I have also had to have my right fallopian tube removed a few years ago following an ectopic pregnancy.

I am really struggling to cope with the pain still (whether that is from the operation and im healing, or due to the endometriosis). when i went in for a follow up from the op and following severe pain i was told i may be one of the unlucky ones who may have the endometriosis return.

that leads me on to why i have joined this page.

i have been feeling very low and upset wondering if i will ever be able to get pregnant. (i have one child already - who is 5), but due to me having the above problems/issues i wondered if anyone had any advice for me. we have been trying for just over 1 year now and still nothing has happened.

Im worried that all the issues i have is stopping me from getting pregnant. my partner has high hopes that now the endometriosis was found and removed that our chances have improved.

Any advice/help would be much appreciated.

Thank you :)

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Hi, I'm really sorry to read you have endo and that you have been TTC for a year with no joy.

While I have no actual advice really to share, I also have been recently diagnosed with endo (Tues) and myself and partner had been trying for over 2 years. My understanding of endo is that while it can cause infertility, a lot of people conceive with endo - especially after surgical intervention.

What I would say is write down a list of questions and ask them to your gynecologist or better still, ask to be referred to a BGSE specialist endo centre who will be able to understand what impact your condition could be having on your fertility.

I know its easier said than done, but try to relax during this time. I have been driving myself insane with worry too but the old saying is 'worrying wont stop the bad stuff from happening, it will only stop you from enjoying the good things' and that's so so true.

Have a plan, do some research - but not too much that you have already written yourself off! And ask your concerns to those who can help you with answers.

Take care if yourself and your family and I hope it happens soon for you. Fingers crossed xxx

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thank you so much for replying back.

it felt good just reading your reply and that someone out there listened. thank you so much for the advice! we plan to go to the GP next month and see what they say. see if we can be referred elsewhere as i feel that they dont want to listen.

im sorry that you have also been trying for two years with nothing happening but hopefully you can get to endo sorted with surgical intervention and things may start to happen :)

take care, if you need to talk ill listen :) xx

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It's no problem at all lovely. If things dont feel right, then push push push to see someone that will listen.

Thanks for your kind words, unfortunately the TTC journey took it out of us both and were no longer together :( after almost 10 years of a relationship.

It's been the most difficult year of my life so far but I know thigs will get easier especially now I know what's going on inside!

The world has it's way and it is what it is. I strongly believe that things happen for a reason and while I'm yet to see any positives (at all) right now, I'm hopeful that these tests have been for a very big reason.

I truly know how difficult things can be in this journey so please make sure you look after yourselves and be sure to talk talk talk about how you're feeling whenever you need to - we're all here to listen and support too :)

Xx

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oh my goodness im so sorry to hear that! its horrible when a relatiionship can break down through that, the stresses are terrible.

i have spent many many nights crying and paying that i will see a positive test.

im thinking that my job doesnt help with me trying to fall pregnant. but i do love my job so its like do i try something else and see or wait and see what happens?

it is true that once you know whats happening inside things change. it didnt help pre op that w were trying and there was nothing happening but my partner keeps saying its is probably because i have had the endo for a while along with the one tube missing and the PCOS that we have not been able to fall pregnant.

i feel like i could talk and talk for hours but feel people would get bored and tell me everything will be ok but for once i want someone to be understanding and realise sometimes its not ok and im not ok.

hope youre ok xxx

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You're allowed to not be OK! Absolutely. It's not nice but you're allowed and after a cry, normally I feel so much better and dear things a little clearer.

I know what you mean about the job.. mine never was the easiest however I knew they would be supportive with time off for IVF and flexibility so I stuck with it but in hindsight now, I probably should have carried on like I would have normally because nothing is set in stone unfortunately and we put our lives on hold with holidays and other things which no doubt had an impact.

It's good to talk about how you're feeling and it's so so important!! It sounds as though you have a lot on your mind with everything that you have gone though which are valid concerns. I hope that you get all that you want shortly, I really do xx

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Hi KPiglet,

I read your post, I'm so sorry to hear you have endometreosis and the possibility it may be returning.

I've had sever endometreosis for over 4 years and I've had 4 surgeries in four year. The good news is that in the middle I had my 3rd son.

If you are having symptoms of the endometreosis it will affect your chances of bring pregnant, I would suggest you God back to your gynaecologist saying you feel the symptoms r back and you require another laparoscopy to deal with the endometreosis. As soon as your recovered from that OP (I believe it's a month of no sex but please listen to your doctors advice), that will be your best chance of conceiving.

Stress is the biggest barrier to overcome, I have a friend with polycystic ovaries who was told shed never had kids, and when she gave up had 2 just 2 years apart, and I have a friend who once diagnosed with endometriosis could not conceive again.

One of the biggest battles with endometreosis is the emotional toll it can take as it affects your life in so many ways, and sadly some with the condition never concieve.

I wish you every ounce of luck I can push your way, and it's true that the next surgery may be your last and could get rid if it for good. xx

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