Severe endo is a hysterectomy a good option? - Endometriosis UK

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Severe endo is a hysterectomy a good option?

Leannekate profile image
8 Replies

Hi, after suffering over the last 4-5 years of severe pelvic pain and having various lapatoscopy's for chocolate cysts I have now been diagnosed with severe endometriosis 😔 Endo specialist now has decided I need a full pelvic clearout with possible bowel resection. I am as you can imagine very nervous about having this procedure especially that I have been warned that may end up with a colostomy bag 😔. Has anyone got any advice whether the operation will be successful and how dangerous is thus op?

Thank

Leanne

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Leannekate
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Sweetyassi profile image
Sweetyassi

Hi, I had hystercretomy done 3 years ago and my Endo still came back. Hystercretomy doesn't cure Endo at all. I had a clear out last year November, I had Endo everywhere and my insides were all stuck together. I was pain free for about 6 months and felt great, thought I got my life back after 6 years of pains. Sadly my Endo has returned and so has my pains. I have had numerous ops almost every year for the last 6 years. I know I will have another op layer this year. My surgeon was very skilled and assured me that he removed every bit of Endo and adhesion. I went for a check up last week, and it has been confirmed that Endo is back.

I hope everything works out for you whatever you decide to do.

Sweety.

Leannekate profile image
Leannekate

Hi Lindle, I have seen one of the top endo specialists in the south east and he feels this is my best option. They have the mri and pictures of my insides after failed lap in October and gyne consultant was unable to remove cyst due to adhesions everywhere 😔 And took pics so endo specialist could assess. I think what frightens me is to go through all of this major op and be back to square one. I will be having ovaries removed as well so will be on Hrt 😁 How old are u if u don't mind me asking?

Thx

Leanne

Leannekate profile image
Leannekate

Hi sweetly, so sorry to hear your op didn't get rid of this nasty thing inside us 😔 Did they take your ovaries out as well? Xx

in reply toLeannekate

I too had hysterectomy with ovaries removed over 10 years ago and have since had two surgeries with excision specialists one with a bowel resection for bowel endo (8 years after the hysterectomy-frozen pelvis each surgery)...so it is true removing the organs doesn't remove the disease...only removing the disease at the root will get rid of the disease...good luck this is a hard disease to conquer! xx

CarlaAlex profile image
CarlaAlex in reply to

Hello

I am going to remove both my ovaries due to severe endo , doctors suggestion . I am so confused, I am so tired of suffering

Please help

Carla

Leannekate profile image
Leannekate in reply toCarlaAlex

Hi Carla how long have you had this going on for?

Your not alone honey xx

Leannekate profile image
Leannekate

Thanks for your comments Lindle, did u have the endometriosis on your bowel as well?

Thanks

X

Arcadia-77 profile image
Arcadia-77

Hi, I think you are possibly not being given the best advice and course of action here, I would suggest that you seriously consider looking into getting a second opinion. A hysterectomy doesn't treat Endo, please read this post healthunlocked.com/endometr... . Even though you are currently with a specialist that you are led to believe is a good one, the level of skill varies greatly between them, there are other UK NHS specialists who would hopefully have the skill to remove all the Endo, and not need to remove your organs.

If I am correct from your post it seems as though despite previously having surgery to remove endometriomas, you have only just been diagnosed with Endometriosis, so have never previously had surgery to remove the lesions, and are being offered this as a first line of treatment?

How old are you too? Having your ovaries removed can have other major repercussions as they are vital for several aspects of our health, it's really not something that should be taken lightly.

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