Side effects on progesterone do I go for full hysterectomy & bowel resection

I have stage 4 endo mainly on my bowel. It was discovered after a ruptured ectopic in 2014. I've had a laparoscopy post this & my consultant was very honest & said I needed to either have hormone treatment or full surgery with probable bowel resection as I have large nodules (he admitted he wasn't keen on performing surgery on me!!) I've tried northisterone at different doses & mini pill cerrelle but get really bad low moods & anger, fatigue to the point I can't get out of bed, ibs symptoms & still having rectal bleeds. My gp recommended combined pill but I'm 38, bmi of 30 & family history of heart disease which are all risk factors. He recommended I ask for my ovaries to be removed & go on hrt rather than medical induced menopause with 3 monthly injections. It all terrifies me as I'm seem to be sensitive to hormones & scared I will be just as bad on hrt!!! This is all affecting me & I don't think I'm much fun to live with & I have a 4 year old. Anyone had experiences of this? I feel so lost were to go.

10 Replies

  • Hi CC,

    I am in a similar situation and have chosen to have a bowel resection. I had severe endometriosis removed about 3 years ago. As part of the operation they shaved my bowel but did not resect at that time (I am was only 24 and it was not something we had discussed in detail).

    I also do not tolerate hormone therapy very well. I do currently take the combined pill which helps my symptoms but only marginally. I read a lot about postrap etc but decided against it. You are only supposed to use them for 6/12 months and they had awful side effects.

    In relation to removing you ovaries, my consultants haven't discussed this with me (I assume because I want another child). But I would ask your specialist as GP's really do not have any idea about the disease.

    I really hope you get it sorted, I have a 18 month year old and I appreciate how awful it can be living with this horrible condition

  • Thanks for your reply my gynae doc seemed shocked with the side effects on northisterone so I was worried to say I'm having problems on the pill as well. It's nice to hear it's not just me I was thinking it was in my head! I keep being given a registra when I go for follow ups & they seem a bit clueless what to do with me.

    Let me know how you are post bowel resection the whole thing terrified me & my consultant was very negative about it when discussing options after my failed laparoscopy.

    Good luck with your surgery I hope it works for you.

  • No it definitely isn't, I once tried to run my pills back to back and it just gave me migraines!

    I have two consultants one from gyn and one from colorectal. I always see them. I saw a registrar at first as he did my diagnostic laparoscopy and he wasn't very good!! He couldn't answer any questions and it just left me frustrated.

    I would request to see a consultant and the same one for continuity. You can look them up on BSGE centre website. I hope you find a consultant you can discuss things with as it does make a difference and it might help you reach a decision.

    I will keep you updated, I am very worried about the risks but I can't imagine being in pain for the foreseeable future. I felt a lot better after my last surgery. My surgeon made me very aware of the risks but reassured me that he did bowel resections often.

    I hope you get it sorted.

  • Hi - are you in the UK and if so what area and are you being seen in general gynae or a specialist centre?

  • Hi yes I live in the uk & under a endometriosis specialist in Surrey/Middlesex. Sadly since he gave me the options of hormone treatment or hysterectomy/bowel resection which he basically said he didn't want to do I've been left with registrars. I'm seeing someone in a few weeks & I'm torn between saying "I will live with it" & "go for the op". I'm worried I will have big surgery but still have my pains etc because they missed a tiny bit of endo & having the same side effects on hrt!!

  • Ultimately you would have to agree to surgery but if a specialist surgeon at a BSGE centre has said he is not keen on doing surgery then it indicates that he doesn't think he is skilled enough. Surgeons at these centres are required to have the advanced excision skills to excise all endo wherever it is and to be able to undertake bowel resections if required. Full infiltration of the bowel wall is very rare even with severe disease - have you actually had an MRI to confirm this is likely or is he just guessing? And anyway complication rates are very low with the right surgical team. If a surgeon is not confident to undertake surgery that he is required to have the training for then I would be very wary and suggest you get a second opinion from another centre. Have a look at my post on how to find one.

  • Never had an MRI it's never been mentioned! He diagnosed it after a lap last year. He said I was full of endo but the worst area was my bowel as I had lots of small "nodules" & a very large area that needed shaving/excising! They tell you so much info in such a short time & I must admit probably didn't take it all in as he told me I would find having another child nearly impossible without ivf. That kind of threw the appointment!

  • when u get to your appointment ask if u can see the consultant you are under and not one of their registrars. after a lot of messing about i do this everytime now. its for your own benefit to have continuity of care. each doc has a different opinion and this doesnt make any of our decisions any easier. x

  • Must admit I was thinking of asking to see him again I need someone who really understands drugs & the ops. Thanks for your help it's nice to know there's other people out there with similar issues x

  • Well the appointment went well. I was reassured that some people just can't tolerate tablet progesterone. We talked around the options & we agreed on a 3 possible options. 1. Operate which includes hysterectomy as I have multiple large fibroids, 2. Mirena coil as the progesterone is absorbed where I need it & should give me minimal side effects like the pill or 3. Leave it at present get the drugs out of my system & see how my pains go & then decide.

    I've currently decided to let my body settle for 3 months as I'm still having side effects & feel unwell from the pills I was taken. I'm then going to decide which to do coil or op.

    This condition is such a nightmare as there are no guarantees on what works. Thanks everyone for your advice I felt less daunted going in this time.

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