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Endometriosis UK
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Sorry I had the hysterectomy

I am sorry I had hysterectomy I am in more pain now then I was before and i still bleed through both ways I been waiting to see what they going to do appointment on 24th xx

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I am so sorry that you are feeling this way. Lots of gentle hugs XXX

It's a big operation and carries a big emotional toll too and both can take many months to recover from. Perhaps it is worth having some counseling to work through how this difficult decision has affected you.

Hope things gradually start to improve for you X

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Thank you so much xx

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Thinking of you. X X X

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Very interesting to read your post. I have been advised that I need a hysterectomy but am not pursuing it for now as I would like children but also because I have read posts similar to yours. I did bring this up with my consultant and based on my MRI a hysterectomy is favourable but if it doesn't cure the pain then I think I will wait a while. Please keep us updated on how you are getting on and if your symptoms improve over time. I really hope they do. Good luck with your appointment on the 24th x

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I have two boys but they told me that having hystrectomy that it will go but no I am more pain now than anything xx

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You would think a hysterectomy would get rid of the pains as everything is being removed. Did you have the operation a year ago?

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A hysterectomy is a last resort and should not be put forward as a cure for endo. If any dr tells you that leave immediately and seek another dr. If a bgse specialist says it is the only pathway for treatment again take some caution and ask about other medical pathways first.

Just because they remove the organs doesn't mean it is cured. If the endo is severe they will not be able to remove it all and the endo can produce its own oestrogen and continue to grow.

Hysterectomies have helped some people but others have the same or worse pain.

I was ill advised by two general gynaes that I needed a hysterectomy at 37 to cure endo.

Subsequently I paid for a consultation with a top bgse surgeon who actually listened to my symptoms and how it affects my life and said there was absolutely no need for a hysterectomy.

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Your post has really made me think. I did pay to see a BGSE surgeon. I chose to see him because of what I had read from other women online about him but also because he is involved in an endo charity in the midlands so I just thought he would be a good person to see. I took a 6hr round journey to see him. I feel he really did listen but when I saw him I was in a bad way and a hysterectomy was what he suggested. As a surgeon I don't know what else he could have suggested? I did an MRI under him and the results were terrible. I was crying in the appointment, I think he thought a full hysterectomy would be my best option but personally especially after reading this thread I don't think a hysterectomy will be a solution for me. I am starting enzyme therapy soon. Already dietary changes have helped. Thank you for your post. It does go to show that different professionals share different opinions and this can be very confusing. I had a terrible experience with a gynaecologist years ago who humiliated me so I eventually went private. Between going private and IVF I am spending a lot and probably still not getting the right advise, this forum has been a great help already xx thank you for your post

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Thank you I will keep you up to date.xxx

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Yes I did and it was a full one abdominal one since I am still having bleeding every month and only since the hysterectomy I have been bleeding from back as Well xx

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I really would have thought that over time post operation that symptoms would just improve. I have been through so much physical pain in my life that if I went through a full hysterectomy I would expect to live pain free. I really hope you get some answers at your appointment. It would be interesting to know what they advise. X

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That's no problem I will keep here up to date soon as I know xx

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Were your ovaries removed too or just the uterus?

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Yes everything gone .

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Sorry to read this. It's very disheartening! I read this a lot I'm afraid! Hyst is so extensive a procedure, it does take time to heal. Adhesions can also form and these are painful too!

Were you treated in a BSGE centre?

What kind of endo did you have? Bleeding from back passage makes me think if Rectovaginal endometriosis, which has nothing to do with other types of endo. Therefore a hyst was clearly not a solution to your endo issues.

If you think you have been treated by someone else than a BSGE specialist you can make a complaint. there is a UK FB group that contains lots of advice and files, one of them is about complaints (Endorevisited UK...)

Hope it gets all sorted very soon and once you are completely healed, you will feel better 💪

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Thank you so much xx

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The Facebook group is really great for people with severe endo looking for answers. X

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Am on one of the Facebook not sure of it the right one xx

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Sorry to hear you're suffering but it happens. I had worst pain after hyster too. Thankfully bleeding stopped.

Get a referral to BSGE clinic as clearly what are described "as normal" treatments for endo hasn't worked for you so they can help.

It may be endo has kept growing since op or it could be adhesions causing pain but they'll know best.

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I have asked my consultant and my Dr to go to the bsge but still waiting it's driving me nuts xx

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Hi Rosie

I really feel for you. I am in a very similar situation at the moment after being treated by a general gynae and undergoing a full hysterectomy when endometriosis was found. I am in severe pain every night just as I was before the operation with the thethering of endo from side to lower colon, nodules and rectovaginal endo so assume some is left and I now have trouble processing waste. The hysterectomy has not resolved my pain yet and left me depressed and angry, can't sleep (endo pain and slammed into menopause) and no sex drive or life. GP hopeless and reluctant to refer to BSGE as he didn't know of them. He won't loo into HRT as my consultant said it wasn't a good idea with endometriosis. Sheer ignorance on both parts.

I hope you have more luck than me.

I am crying with you. Xxxxx

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Please put in a complaint to your surgery and see a different GP. x.

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Thank you I will xx

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