Endometriosis UK
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Should I got for IVF?

HI Guys, it's my first time commenting on this site I didn't realize how many people suffered with his awful diease. I can't believe what's happening to me. I've always suffered bad with my monthlys. Five years ago I collapsed with severe abdominal pain and haemorrhaging. It scarred me quite frankly. They did a lap investigative procedure and my surgeon who is a lovely man said I had the worst pelvic area he had ever seen. All my organs are matted together with endo and are stuck on the left hand side of my body. My Bowel, Bladder and womb are welded together and twisted. My monthlys are so painful, heavy and I feel rotten. I've had treatement with Prostap for six months and been on Cerezette bu the bleeding keeps on going. I don't know how many times I've been taken into hospital because I just can bear the pain and collapsed. The pain in my stomach and down my legs and around my back is awful. To top everything off I have numerous falicular cysts which keep bursting every month and another large cyst on my right ovary. i also have fibroids which are 3 cms x 4 cms and 4 cms by 6.8cms. My surgeon keeps mentioning having a hysto and I am reluctant to do this. Stupid I know as my quality of life is rubbish, it's affect work, home and relationships. All I have ever wanted is to be a mum but being pregnant carries soo many terrible risks for me so they say. I really don't know what to do. My head and heart are contstantly arguing and I just feel so tired and drained. I wish I could shut everything out and let my mind rest from it all. This is all knew to me, these feelings. I don't understand how I've got this, does anyone really know? Any advice girls I feel like I am going mad.

2 Replies

Hi Tracysam,

I had one attempt of IVF due to endo and hydrosalpinges (blocked tubes) due to the endo. I too get very fatigued, and my endo pain is so bad three days a month I cannot walk very well and keep having to take time off work. It too affects my quality of life - friends, home, the amount I can exercise.

When I was going through the IVF treatment, which is emotionally challenging, my biggest concern was how on earth will i cope with a baby, when my endo is so bad. I kept thinking, maybe i should have got my endo treated first, as how will i cope with the lack of sleep and having to look after a child when i feel like this.

My first IVF failed, which gave me chance to re-evaulate and i decided to get my endo treated before i try IVF again, which i definately will. I too was told get a hysterectomy previously, but i declined as i felt this was too extreme. So I am now seeing Mr Trehan in Elland who is planning on doing total pelvic peritonal excision to remove all the endo, including what is on the bladder and bowel. Apparently when they laser or use diathermy they cannot treat the bladder or the bowel as if they burnt it, you cannot stich it back together so it gets left untreated. Therefore he said laser or diathermy would be a waste of time for me. The IVF failed due to my blocked tubes as well, as this reduces the chance of conception in IVF from 33% which is the average conception rate to only 25%. So I do regret not treating my endo first, but i was desparate to conceive and wanted to see if I could do it. In hindsight, I knew I should have treated my endo first, but everyone is different.

It sounds like yours is very extensive, and total excision may be able to help you. I have been in contact with a lady who had very extensive endo and kept going to A&E with pain and was on morphine, and following total pelvic excision is virtually pain free. I hope this helps and if you want to know anything more please do let me know.

Miwa xx


Thanks Miwa for your response. It has given me a lot to think about.

Take care of yourself. Tracysam x


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