Hi all.
Thought it was about time I shared my story, as, I’m sure with many of you, I’ve been feeling pretty low and alone with all of this.
10 years ago I was admitted for emergency surgery to remove my appendix (admitted with severe abdominal pain on my right side). My appendix was healthy so they left it alone, but did remove some retrograde bleeding. Nothing else was done and no follow ups were arranged (naivety on my part). The pain did disappear for a while but gradually got worse again.
Fast forward to April last year, attending a fertility clinic with my husband. A smallish cyst was discovered on my right ovary, and due to issues on both sides, we needed that cyst removed before we could go ahead with IVF. January 2020 rolled around and at the end of the month I finally got my surgery! Going to sleep thinking that when I woke up I’d hopefully be pain free and ready to start the next chapter of our lives! It was unfortunately a different story. My surgeon opened me up, discovered severe stage 4 endometriosis affecting my ovaries and sticking my bowels and uterus together, did nothing as my ovary was stuck behind my uterus, and patched me back up. I was told of the outcome when I was still very groggy, so took a while to process.
2 weeks later we attended the fertility clinic again for a debrief. It was handled poorly. At first we were told that we would just go ahead with the IVF anyway. Then during the appointment our consultant changed her mind, put me on the NHS waiting list for further and more complex surgery (18 months) and took us off the IVF waiting last completely as guidelines had since changed (BMI now needs to be under 30, not 35 as we were told). I was also put on a waiting list to see an endo specialist (6 months) and to have an MRI (6-8 months). After having surgery, provided my BMI is under 30, we’d be put back on the IVF waiting list (12 months).
We immediately went for a private consultation with the specialist who informed us his waiting list on the NHS is actually 2.5 years!! He has also advised that depending on the MRI results, he may not do surgery and to preserve my fertility, put me into induced menopause (at 35, ha!) until we go for IVF. Now I’m hoping through Benenden I can get the MRI privately and if they cover, get the surgery, if viable, done privately too.
I guess the point of this post was to get it all off my chest, so congratulations to anyone who has made it this far, and thank you so much for taking the time to read. I’m feeling super low about it all, and no matter how hard I try to put a brave face on, it slips. Knowing that if I can’t get my surgery privately I’ll be waiting at least 3.5 years to start IVF (I’m no spring chicken, I’d be nearly 39 then) absolutely devastates me, and having this debilitating pain (which luckily only hits for around 7-10 days a month) is actually destroying me!
Once again, thank you for reading, and hope you are keeping well yourself 😊
My story 
Depressed due to Endo pain, IVF and abortion
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My story
Post-lap / Shutting down ovaries / IVF
