New to this :): Hi All, hope your all well... - Endometriosis UK

Endometriosis UK

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cherwatkins22 profile image
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Hi All, hope your all well.. :)

I recently was diagnosed with ENDO and PCOS. I suffered withe chronic pain since Nov 11 and after key hole surgery, hospital appointment after hospital appointment, I was finally told that the ENDO was quite extensive on my ovaries along with me PCOS. I assumed they would be able to operate and remove this and life would go on as normal. But I was struck with news that the only way they can fix me is by removing my womb and ovaries.

They want to do this well before I am 30 years old. :(

I was so upset by this, We decided for my benefit I would try the pill back to back for 6 months breaking for a week every 3 months to slow the growing down, if that didn't work I would have to have injections that would only last 6 months at a time. After this they would like for me to try and have a baby naturally, however they will more likely have to assist me with IVF. If this works or not they want to remove my womb. :(( I feel like my world is on speed dial and has come crashing down around me.

I am so upset and feel messed up in my head. I don't know how to process this information, I just cry all the time and feel like I will never stop crying.

How do you ladies cope with this? Everyone tells me to stay on the positive, but I don't see one. :((

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cherwatkins22
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jojo777 profile image
jojo777

Hi

First of all, I didnt understand if you had all endo removed during surgery or not. One more thing, they should first do and suggest everything else like hormones, coil, injections and surgery, before they even mention the word hysterectomy.

I strongly advise you to get a second opinion with another endo gynae. It might make a difference as different doctors have different approach to endo, maybe more experience etc. My first gynae didnt even see where the endo was in me so I was suffering but when I changed gynae, the new one operated me, saw the endo and cleared it.

I am 32 with endo and no one ever mention hysterectomy as it is way too early to do that, especially before having kids and before trying all other treatments. Plus the most important if there is also endo anywhere else except womb and ovaries, then the problems wont disappear.

Good luck

Jo x

crystal_willow profile image
crystal_willow

wow *hugs*

Rather than repeat the lovely advice others have given I would say that if you are feeling upset and like you are being forced into decisions more quickly than you are comfortable with then it may be a good idea to get some counselling.

Counsellors can assist you in exploring how you really feel about and support you while you research and consider your options.

They are not there to tell you what you "should" or "should not" do

It sounds like you could do with having a safe space where you can explore your own ideas and also let the emotions, that go with the processing of this situation, out.

You can go to your GP for free counselling (waiting list is months but its free) or you can go private.

I went private ; ) and I went every 2 weeks rather than weekly so its not too expensive for me. Now I go monthly.

Good luck xx

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