decision made: So I recently had my results... - Endometriosis UK

Endometriosis UK

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decision made

ch2018 profile image

So I recently had my results from my MRI to say that I have endometriosis in both of my fallopian tubes and they are completely blocked by it. I am having to have open surgery to remove the 3 large cysts on my ovaries and was given 2 options. 1 - they would try to remove the endo from my tubes however if i was to try and get pregnant in the future (i have no kids and is something I desperately want) i would more than likely have eptopic pregnancies due to the damage caused by the endo. 2 - they completely remove my tubes.

I am at the hospital on Friday to tell them my decision and that being I am having them removed.

I feel like to get my health back I need to remove the problem area in the hope I have some time of feeling 'normal' and I was already warned that if my decision was to try and keep them I could still wake up with no tubes because they were that damaged.

Endo has ran my life and the decisions I make for far too long and I am taking back some control by making the decision myself to remove the area!!

Also the support from women on here made me feel better about my decision - so for that I thank you.

Is anyone else in the same position at the moment? I feel a little stronger having come to terms with the decision I have made.

Thanks for reading

C xx

11 Replies

Hi hunny ,I myself had this happen,do not let then remove them .I had lots of extensive work done over the years ,the stripped my right ovary and rebuilt it back up.I had to do IVF so please get them to refer you for this ,XX

I'm blessed with twin boys xx

ch2018 profile image
ch2018 in reply to lainey37

Thank you for your reply lainey37. So you had your tubes removed? I have been told that I would be referred for ivf straight away after having my surgery xx

Honestly, you are doing the right thing. Have the tubes removed and then when you are ready to start a family, go straight for ivf. That way you wont have to go through the pain and suffering of having to try getting pregnant for 2 years before they refer you. You are very lucky that you have found out before trying to conceive. They took 7 years to diagnose my endo and by the time they had, I had been trying to conceive for 2 years, and it's a very emotional thing to go through. I have some tough decisions to make at the moment and all mine are now based on what will happen in the future x

ch2018 profile image
ch2018 in reply to

Hi Rosanna17 thabk you so much for your reply and I am so sorry to hear the hard time you have had.

In a way I do feel lucky and havnt been left to just keep trying to get pregnant and i worry that I would keep my tubes and potentially have to go through numerous eptopic pregnancies before being given more help.

I hope you get the answers to your tough decisions you have to make x

Hey ch2018, I’m in a similar position being told I need a hysterectomy but not having the family I want yet. It’s amazing that you have made that decision, I can’t, im still in denial I think lol. Your decision is right for you and you should be proud that you are taking control x

ch2018 profile image
ch2018 in reply to maaf

Hi Maaf. Thank you for your reply. Honestly it was an extremely hard decision to make but as the days go by I feel happier with my decision.

You will make the decision you need when you are good and ready.

All I can say is before I made my decision I spoke with a work colleague who told me that his wife was adopted and how she adores her 'parents' as they do with her and just because they are not blood does not mean a bloody thing!!

After having had this conversation it made me a feel a little more hopeful - whether I have ivf, whether I have a surrogate or whwther I adopt, I will have a child and a family that I want and will love and cherish no matter how I got it.

Hope these words give you some sort of little light at the end of the tunnel xx

maaf profile image
maaf in reply to ch2018

They really do ch2018 thank you. I guess for now I’ll just have to dote on my dog and be one of “those” people ha ha

ch2018 profile image
ch2018 in reply to maaf

Haha im one of those people too. I have 2 shihapsos and they are my babies. I even have their christmas eve pyjamas laid out under the tree with their Christmas day presents which I have totally wrapped and even put a box in the way of me and the dogs when I was weapping them so they didnt see 😂😂🙈

It’s a very personal decision, but can offer a bit of insight. I had an MRI and was told my Fallopian tubes were blocked and really enlarged and I’d need it removed. When I went for surgery, there was actually nothing wrong with it. It was actually my ovary that was so enlarged from endometriosis, that it was covering my tube. MRIs don’t tell the full story unfortunately. X

ch2018 profile image
ch2018 in reply to Moolis123

Wow moolis123 thank you for your reply. I did not know that mri's were not a full story. My doctor made out this was a dead cert that it was in my tubes and was blocking them. It is definitely something I will bring up with them when I am in on Friday. So did you have the endo removed from your ovary? x

Moolis123 profile image
Moolis123 in reply to ch2018

Yes me too. I have stage 3 Endo. My left ovary was full of Endo and he removed that. My right ovary too, but it’s stuck to my bowel and he didn’t have consent to touch that, so had to leave it. Seeing my private consultant today to discuss removing my ovaries. Really don’t wa t that doing and pain is manageable.

I was shocked that the MRI didn’t pick up any Endo at all. Everything looked clear apart from one blocked tube.

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