Shock of diagnosis and surgery

[Mxc908]

Hi everyone,

I’ve posted on here a few times since my diagnosis and surgery 6 weeks ago. I’ve found it really helpful, so thank you all 😃

I just wanted to ask whether people have experienced similar to me - I’ve found that since I’ve been diagnosed with endometriosis and adenomyosis (and had extensive endo removal- much more than expected and even more than the surgeon had scheduled for!), that I’ve found it to really hard not to ruminate about it and feel quite troubled by it.

I’ve actually booked to start sessions with a clinical psychologist who specialises in women’s health soon as I’ve found I’ve had so many feelings of shock/anger/frustration/anxiety/preoccupation with it all.

I want to start trying for a baby and so obviously the worry about that weighs heavy, but I’ve found it quite hard to just stop thinking about how bad it had got (especially having seen pictures…!) and basically feeling like my insides were riddled with disease!

Then there’s the feelings of having been fobbed off all these years and having had to fight my corner whilst starting to wonder if it was all in my head etc!

At the minute, I have to to bed listening to something otherwise the rumination about it all keeps me awake.

Has anyone else experienced these feelings?

xxx

[SprockerH]

Hi there. I can say that I had similar feelings, I've never thought much about having children and had just come out of a long term relationship so was not in the position to even if I wanted, but to then be told at 35 I have ovaries of a 45 year old and endo it really did affect me mentally.

Any medical diagnosis whether a positive or negative outcome can affect us mentally and it can be different from person to person, it's almost like a grieving process in coming to terms with the outcome. Going through the various stages of depression, anger, anxiety etc.

I would recommend discussing with your GP and perhaps completing a course of talking therapies to really get it off your chest and your mind to some extent.

If you don't like the thought of speaking to a stranger then discuss it with someone you feel comfortable with.

I would also say try not to worry too much (easy to say I know) as even people I know who have had severe endo have gone on to have a child with no issues whatsoever. It really is just a case of trying and seeing! And I think if you can get your mental headspace right then you will have a much more solid ground to start trying on.

Harriet

[Mxc908 in reply to SprockerH]

Thanks so much for replying and for being so honest. I hope you are feeling like you have processed things and are feeling better about it all now.

I have recently sourced a clinical psychologist who specialises in women’s health to do sessions with as I really don’t want all these feelings to fester and affect my mental health when trying to conceive!

Thank you again xx

[Sunset-lady]

Yes! I had a hysterectomy booked for 5th Sept but when they went in they found advanced endometriosis has fused my cervix to my bowel and left ovary. The shock was terrible. I didn't even know I had endometriosis. I felt lost (still do) and very depressed. They put me on provera which has made everything worse. I'm bleeding constantly, putting weight on , unable to exercise or have sex and I'm drinking too much after years of not drinking at all. I'm angry with myself for normalising my symptoms when I was younger and just putting up with it. I'm angry that I'm the kind of person who puts up with things. Now I'm in a terrible position where every medical person says "you need to go through menopause" how can I force my body to do that! So yes, I'm shocked and saddened by it all too.

[Mxc908 in reply to Sunset-lady]

Thanks for reaching out and sharing your experience with me. I’m sorry to hear you’ve had such a horrible time.

It is a real shock isn’t it? I think the anger and frustration have been feelings I didn’t expect to experience. I have been trying really hard to not push those thoughts away and to rant about it to friends and family, but also balancing it with not getting stuck on those feelings, and thinking about what I’ve done to make things better.

If Provera isn’t working for you then definitely let them know and ask for a different plan of action ASAP!

I really hope things improve for you x