Endometriosis and Adonomyosis

Hi. I'm after some advice pls if anyone here has had a diagnosis of the above.

I've been put on a waiting list for total hysterectomy, there are adhesions on the bowel as well so there is a risk involved.

Anyone have any experience of this, have you gone through the surgery, how was recovery? Did it improve your symptoms?

Sorry for all the questions, but, any advice would be very much appreciated.

Thank you for reading.

24 Replies

  • Hi I was recently diagnosed with both and on waiting list for hysterectomy where they will also remove ovaries and excise endo.have been told hopefully January but in the meantime I'm starting zoladex injections next week. I wish you all the best and keep us posted . Good luc

  • Thank you for replying Jean. Can I ask what zoladex is for? This is all new to me as initially they thought I had OC. I'm on codeine for the pain and anti sickness tablets as I throw up often.

    They have said nov/dec for my op which will involve removal of everything.

  • The zoladex brings on menopause so is to hopefully reduce symptoms and apparently it can reduce the lining of the womb so I suppose it might make the hyst easier. What is oc? Where a outs are you? Keep in touch

  • OC (Ovarian Cancer).

    I'm in the South East.

    I'm not too happy about having the op. Lots to consider and get my head around so I'll be on here trying to get as much info and advice looking through the old posts too.

    Good luck with your surgery too.

  • I bet that was scary. If you need to talk just pm me us girls need to stick together I live in Southampton. It's such a lot to deal with and also except but we'll get there . Look after yourself Hun.

  • Thanks so much. Yes it was very scary, but, I also find this a little scary too. The unknown.

  • Hi i read ur story shook up iam also suffered from endo..could u tell me pls ur sympto.s why they suspected u from OC

  • Hi Lorena. I was very ill, blood tests were suspicious enough to warrant an urgent US. A mass was found and everything spiralled from there really. Because I was under constant watch, they picked up on the Endo/Adon. I never really visit the gp, I tend to just put up and shut up. If I hadn't taken so seriously ill I probably would have continued life as it were for years.

  • Oh wow ir is scary really hope and pray tha ur okey now.. me in quite settled after my lap 6yrs ago and had mirena coil for almost 4 yrs now..rwally jad all the issues and hardships battling my endo and sickness of having coil fitted inside me but sometimes i still have these pinkish in color monthly spotting and sometimes.stabbing pain on my left side pelvis..i always complain to my gp but she kept telking me that its just normal becoz of.my endo but i really want to see.a specialist. Can u recommend one..thanks and good day..

  • Hi I had a diagnosis of adenomyosis and endometriosis stage 4 with implication to my bowel after many years of struggling with the symptoms. I had a total hysterectomy and bowel resection laparoscopically (although bowel resection had surprisingly large incision!) in March this year. The procedure itself was very long but I was very well looked after in hospital and at home and recovered very quickly. I was back to work after 4 weeks and currently feel amazing. I hadn't quite accepted how terrible I was feeling before and how much pain relief I was actually taking weekly-now I rarely take pain relief, just for the odd headache!! I was put on HRT the day after op and luckily so far it suits me. It is def the best decision to have the hysterectomy. I live in Surrey and think my consultant was excellent-he is still keeping an eye on me just because of how much was going on before my procedure.

    I hope you don't have to wait too long.

  • Do you mind if I ask how old you are Tracy? I'm struggling with the thought of cutting the chances of having children completely. They will take everything away including the ovaries (see the OC scare). Everything is stuffed. They have told me it won't be laparoscopy, it will be a cut from the naval down.

  • Hey oh gosh that's tough when you feel that way about children and clearly your op will take significantly longer to recover from. I'm an old lady at 47 with grown up kids and finished my family a long time ago. How old are you?

  • Hey, I haven't had the op yet but same diagnosis.

    Hystersisters and the adenomyosis advice association are good resources for info & more specific support, the latter has a fb page too.

    Hope all goes well for you xx

  • Thank you for that. I will check them out. Good luck to you when the date comes in.

  • Hi, I was diagnosed with both in December when I had a lap. I've gone private as NHS kept cancelling my follow up appointments everytime they were due. I'm still waiting for them to call me since they cancelled 6th July!

    anyway, i managed to find a lady doctor that brought some sort of reasurance. I had the mirena coil inserted on Monday as I already have 2 cyst, one on each ovary (5cm and 5.5cm each), the idea is the mirena will reduce my periods and hopefully the cysts will start shrinking.

    I'm actually devastated about it because since finding out what I had in December I changed my diet drastically, even changed my cosmetics for paraben free cosmetics, keep exercising, drinking water, stop coffee which I love, etc. I obviously don't know how bad it would've been if I hadn't made those changes. Saying that the pain during these 8 months has been there but not too bad (based on how other ladies feel), so maybe the changes I made have helped.

    I think the coil is a step before the big operation, would like to try everything that's possible before we do that but I guess ultimately if I can't control it, that will be the way to go.

    I'm not sure if this is of any help but at least you know you are not the only one :) x

  • That's been a good help actually. My gp this morning has put me forward for the coil in the meantime. I never got the chance to ask the consultant as he completely threw me off guard (don't you just hate when you're expecting one conversation and they throw something unexpected at you lol). Part of me hopes the coil will help to the extent I don't need the op.

  • You're post re diet made me laugh at the irony of it all. I say to people I was healthier when fat lol. I lost 6st over the course of 15months by following SW. Took I'll 2 months later. In all seriousness tho, I don't think I would have been fit enough to fight the illness when it was at its worse if I had been the weight I was before healthy eating.

  • haha you know i keep thinking of my friday treat, starbucks mocha.... That was one of the first things I thought, was it worth giving it up!!?? I guess we'll never know but hopefully we are helping minimise the severity of the situation by being 'good girls'... :(

  • Hi,

    I had a total hysterectomy and both ovaries removed 7 days ago. Try not to worry even though it's early days for me I feel better and am in less pain than I was the week before the op (when I'd had a big endo flare up). And also less pain afterwards than from previous laps.

    I was in hospital for two days, my bowel was stuck to an ovary but I've had no complications.

    I was put on hrt patches day after op and really do feel fine in myself and hoping this is a brand new start for me.

    I'm in the South East too (Southampton) if you need any more info let me know.

    Good luck and try not to worry.

  • Oh wow, I'm so glad to see you're doing so well and positive so soon after the op, I hope that's the way I am, especially as I know the bowel is involved too. was your surgery laparoscopy or open abdominal? I will need to have the later.

  • Hi,

    Thank you, I had the op done laparoscopically. However even though I'm relatively young (38) I knew I didn't want any more children, so it wasn't a big emotional adjustment for me.

    If you're not sure about children I would definitely try and get a second opinion before going ahead with the op, as consultant's opinions and skills do vary considerably. Mine cost about £220 but it was well worth it.

    I also tried the coil before this, it wasn't for me but it works for some people really well. Hope it works for you :)

  • Hi Anna I too live in Southampton and was recently diagnosed with endo and adeno. I had a 11cm cyst on my left ovary which was drained when I had lap in July they couldn't find my right ovary as it is stuck behind womb , both bowel and bladder are stuck to womb. Will be having total hysterectomy and ovary removal along with excision hopefully in January. I'm glad to hear you are feeling well.

  • Hi Jean,

    Thanks, poor you. If you need to ask any questions about the recovery just let me know.

    Good luck

  • Thanks Anna

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