Fertility Preservation - Similar experiences?

[Wilsoc1]

I’m not sure what I’m asking here, maybe some advice or experiences from others for reassurance…

After suffering with extreme pain during my cycle for years I was finally offered a laparoscopy which went ahead 4 weeks ago. Since then I have had a period which lasted twice as long as usual and was more painful than before surgery. When I was discharged I was told that my endometriosis was severe and cysts had been removed from both ovaries. Endometriosis was found in my ovaries etc as well as my diaphragm and bowel along with adhesions in my pelvis and uterus (and other areas I believe). My uterus is immobile and there was mention of this effecting my fertility. I had a four week follow up with the consultant yesterday which lasted all of 2 minutes. He told me he did not remove any endo and I would need to see a fertility specialist to complete fertility preservation surgery - I have no idea what this is - as I am 28 years old and the other option would be a hysterectomy. I left very disappointed that no endometriosis was removed during the lap and that the pain would continue until this was removed. I was told the fertility specialist would be in touch in 4-6 weeks. I was also told that the surgery could damage my Fallopian tubes which could result in needing IVF.

Has anyone been in a similar situation? I have been unable to focus at all since my appointment and am worried that this is effecting my work and personal life. My partner and I have never had any desire to have children however I am somewhat hesitant to have a hysterectomy at this age as I know that things can change… I am considering paying for a private consultation as living without any real answers is causing me a lot of stress.

[Bespp]

Hi there, so sorry to hear what you are going through as it is awful not to have answers. Myself got diagnosed at 30 and if I had to tell my story I would have to replicate yours. A few things I wanted to share with you in hope that would help...Endo has a "mind and life" of its own and by that I mean that you can get better by managing the symptoms or with all the surgeries it can get worse etc. Cyst and other stuff can clear up by themselves so you can better for sure.

What the doctors are saying is a very text book information and each couple is unique and different and there is hope and possibility of a natural pregnancy when you want to welcome it and the only time they will be able to help you is when you are ready to start the journey. They will only do an AMH test on you for the time being.

A hysterctomy is not always the answer to living pain free. You can search this forum and read up other women experiences but the doctors should tell you that as well.

The risk of another surgery is that your egg reserve can go lower this is why they do not reccomend it when it comes to fertility.

Ivf is not always a guaranteed method to either is just an aid so no promises on that side either.

Just wanted to share a few thing that I have been going through as I am sure you can relate but

Without a doubt is a medical trauma you are going through, with so much info and no clear answers so I hear you.

I am on a fertility journey (ivf) now with stage 4 endo and it has been 6 months since it started and things go up and down when it comes to endo but I started the journey with blocked fallopian tubes, glued to the uterus and after 6 months of accupanture they are now open and accessible for ivf so there is hope out there.

Hope my story helps you a bit.

All the best on your journey

[Wilsoc1 in reply to Bespp]

Thank you so much for your reply I have only just seen it after all this time!

It’s reassuring to hear that you have been through similar so thank you, though I am obviously saddened for you to have been through the same.

I’m still waiting for the ‘urgent’ appointment so still in limbo in terms of moving forward but I have now found I can manage the pain quite well with the right medications at the right time so that is a plus (though I hate being so reliant on them for 2 weeks out of 4!).

I’m very interested about the acupuncture you mentioned, is this something you were referred for? I may contact therapists to see if they know how to help me.

Thank you again