Severe endo is a hysterectomy a good option?

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

11 Replies

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  • Hi - is this being planned in an accredited specialist endo centre as that is where this sort of complicated case must be dealt with according to regulations. This is the list - is the surgeon on it:

    bsge.org.uk/ec-BSGE-accredi...

    I assume you have had an MRI - does it actually indicate that your bowel has been penetrated? In the hands of a skilled surgeon a permanent colostomy is exceedingly rare. Even a temporary one is so what evidence have you been given that this is likely? Yes, it sounds as if your surgery is to be complex and of course there are risks but the highly skilled surgeons do it often and have low complication rates. What are the complication rates of the surgeon involved?

    The issue of the hysterectomy is separate. How old are you? A hysterectomy won't cure existing endo so it would be vital that it is completely excised even with a hysterectomy. Are they planning to take your ovaries - I assume so. Have you been given a specific reason for a hysterectomy?

  • 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

  • Hi Leanne - I am 61 and had all my bits out at age 44 and went on HRT. I hadn't been diagnosed then as all my organs were healthy and no sign of endo in my pelvis. But they put me on huge amounts of oestrogen replacement which found my endo and I ended up with stage 4 everywhere. But I was originally dealt with in general gynaecology at a time that there were no specialist centres. I finally got to one at age 55 and had full excision. But you are in specialist hands and it will be very important firstly that all endo is excised which obviously they will know and as long as that is the case there shouldn't be any left for the HRT to stimulate. It would however be important to monitor your blood oestrogen levels regularly just in case and the level will depend to some extent on you age. When you have had your op be sure to go to your GP at least every 6 months and ask for blood tests if they are not offered and be sure to have your breasts regularly checked too. So many doctors just seem to give HRT and then fail to follow through. Also if you are given any medications in your life for any reason whilst on HRT always be sure to check that they don't interact with oestradiol and look at stopping it at around age 50.x

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

    Thanks

    X

  • Hi - after the hysterectomy and BSO I became very ill due to what turned out to be severe allergy to oestradiol. My neurological function was pretty much knocked out with crippling head pain, severe dizziness, disequilibrium, blurred vision, mental confusion/memory loss, hearing problems, strange smells, overwhelming fatigue and all sorts of aches and pains. Interestingly these are exactly the same symptoms as recorded for CFS/ME and my personal view is that they are one and the same. Women with endo are regularly diagnosed with CFS and I think it likely they are suffering from chemical allergy, most likely a reaction to hormones, but just my view.

    As previously mentioned there was no trace of endo in my pelvis at that time and these are the symptoms of undiagnosed endo that debilitated me rather than pain from lesions. Finally seven years after the hyster at age 51 I had repeating acute abdominal pain every month that had me immobilised and was eventually taken seriously and given an ultrasound. I had a large 13 cm mass in my pelvis that was very aggressive and assumed to be ovarian cancer from a remnant. My CA125 was over 1000. Basically I prepared to die but thankfully it turned out to be a very complex and aggressive endometriotic mass made up of multiple chocolate cysts and solid areas with its own independent blood supply that was feeding it. It arose from the Pouch of Douglas and my belief is that this was from what is called mullerian tissue present from birth and that that was the only endo I had, as opposed to any peritoneal endo that is thought to arise from retrograde menstruation. The monthly pain I had was the mass rupturing and spilling its contents and I then went on to have extensive adhesions and widespread peritoneal endo assumed to have been spread by the ruptured mass. My bowel was glued to my pelvic wall with adhesions but I did not have bowel endo. I had my whole pelvic peritoneum removed. x

  • 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.

  • 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

  • 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

  • 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

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

    Your not alone honey xx

  • 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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