Am I wrong to want to wait and see?

I've been recently diagnosed with endo and adhesions, they said they couldn't remove any at my lap as was too extensive, it's all over my ovaries and they're stuck to something, can't remember what :/ lol, it's all over pelvis in various places, and on womb, bladder and bowel and stuck them together, I'm now on the list for a full hysterectomy and whatever else might need doing.

I'm fine with this to a point, but there are doubts in my mind, it's not that I want my womb or ovaries anymore, im 41, I have children so all that side of it fine but before my lap I was in a good routine with managing my pain. I did have a mirena in so that solved heavy bleeding issues, which enabled me to walk daily, and I attended a couple of aqua sessions and a couple of Zumba sessions. Some of this exercise caused me pain, but it never made me feel any worse, as that pain was there anyway, but i still strongly believe that exercise has helped keep me mobile as now with lack of exercise i feel much more seized up. I was managing about 10 hrs work per week too. So all in all, with the help of pain killers too, I feel I was coping/managing with the pain of endo, even though I never knew it was endo for sure.

Now I'm diagnosed, all that's been suggested is the full hysterectomy or six months hormone treatment. I've already refused hormone treatment as I am scared of side effects, even the mirena caused me hair thinning, something which really upsets me. But yes, I'm on the waiting list for the hyster, and everyone says just get it done asap, but to me I'm not sure if I want to go through this op, and just hope they manage to remove most of the endo, And maybe i don't want to go through menopause yet, but all I keep being told is get it done sooner rather later, and don't worry about menopause symptoms you might not have any, and you might not need any hrt blah blah. Ok, it's all ifs and buts, I may not have any real menopause symptoms, and I may not need hrt, they could remove all the endo, and that could be the end of endo, it could also be the exact opposite of all that, but again it's all ifs and buts.

My point is am I wrong to just wait and see, I've struggled quite a bit after the lap, I assumed after a week or two I'd be feeling back to normal, but I've had much more pain, my doctor said it is probably where they've messed, and not removed any endo and probably caused more scar tissue anyway, so this makes sense, but I'm hopeful this will improve with time, but why can't I just wait and see how it goes, I managed before yes I was in pain, and sometimes the pain is too much but I had a life, kind of, at the moment I feel I'm in a bit of limbo, just trying to get back to normal to then go straight into another op, I can't get back to a proper routine yet with work as they're just waiting for me to be off again, for even longer next op.

Sorry it ended up being a long one again, but all this is just going through my mind constantly, I've been so emotional since the lap, and am constantly on the verge of tears, but trying to hold it together so I don't upset my family - hope everyone is doing ok xx

9 Replies

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  • Hi, I'm having that limbo feeling and am feeling better 3 weeks after lap from op pains but my normal pains seem to be worse! I have been told ill need tubes removed and could be open surgery so although its not the same as you as it won't effect hormones the actual going through another op and will it help with pain worry is what I'm thinking. I haven't had follow up appointment yet so hoping ill get answers then but who knows. I have been looking at the specialist endo centres and would it be worth asking to be referred to one for a second opinion? It's a big decision for you and if your not convinced maybe a second opinion would help you decide. As I said I'm not looking at needing a hysterectomy but have read about it all incase they throw that at me and I know at the moment I would try and cope as long as I could until I had no choice but that's partly a baby issue. If you feel painkillers are working and you can manage maybe you could delay it until your sure but you can cancel op at anytime anyway so I hope others that understand more than me can help you decide but whichever you decide its your choice x there are pros and cons and no guarentee with anything from what I've read so sorry I can't be more helpful x I can say I've been on an emotional rollercoaster since op and feel like crying but hide it from my hubby so he doesn't really understand and I don't want to upset him so I know what you mean but your not alone and coming on here and relating to you and others does help me cope x good luck with finding some answers x

  • Hi - I don't want to unsettle you or cause you anymore turmoil than you will obviously be going through at the moment trying to find the way forward but I was at the very same place you are at right now myself a couple of years ago.

    I had extensive stage 4 endo (ovaries, surface of bowel, bladder, ligaments, diaphragm, extensive recto/vaginal - everything was stuck up out of it's natural place).

    I was told a hysterectomy and oophrectomy would be my only hope (by a gynae). I am not against hysterectomy at all for the right reasons, but having researched, I could not see the rationale for a hysterectomy and removing my ovaries as being the logical thing to do when I had endo on my bowel, bladder, recto/vaginal, diaphragm - how was removing my uterus going to sort me out.

    I also pondered on the rationale having my ovaries removed to get rid of the estrogen and then having add back hr . I guesed that they must leave estrogen out of hrt and give you progesterone only but it seems they don't. I have to be honest the thought of experimenting with synthetic hormones scared me. I know many ladies tolerate it well but my sister-in-law could not tolerate hrt and had to come off it. She is probably a rare case but it can happen and it made me cautious).

    I have also read a book by Dr Michael Lam 'Estrogen Dominance' and it suggests that endo and many other problems are caused not by too much estrogen but by estrogen dominance - in other words - too little progesterone to balance out the effects of estrogen. Maybe we don't need our ovaries removed afterall but just need to balance estrogen with progesterone! We are bombarded these days with estrogens from eternal sources, not just our ovaries. Hence more men than ever are experiencing infertility. We are surrounded by plastics which contain chemicals that cause an increase in estrogen when absorbed. Apparently it is in the water supply too because of the pill and also can come from foods, hence the endo diet cutting out gluten and wheat, alcohol, sugar etc is effective at reducing estrogen.

    I definitely would think more than twice before considering removal of ovaries. Mine were in a poor state and stuck up to my bowel but my surgeon re-sectioned them to get rid of the endo/cysts and then did a procedure called 'temporary ovarian suspension' which is where a large looped stick pulls them forward away from the healing peritoneum (following excision of the whole lining of the peritoneum). The stitches are removed a week to 10 days later and the ovaries fall back into place and are then not at such a risk of 'getting stuck'. I have seen surgeons recommend to ladies that 'they might as well have their ovaries removed as they will only get stuck again". Ask them why they can't do temporary ovarian suspension and save them. My consultant said they only need be removed where something like cancer is indicated - not because of endo.

    Like I said, I am definitely not against a hysterectomy for the right reasons and it will help if you have adenomyosis. As you have endo elsewhere, it would need to be done alongside excision surgery to remove other endo. Otherwise you will have had a hysterectomy but still have endo.

    I chose to have extensive excision surgery rather than a hysterectomy. That way, if I still had pain I would know that, as all other endo had been removed, I also would be likely to have adenomyosis. Luckily enough, the excision surgery dealt with my endo pain and I have been endo pain free since January 2011. Plus I still have my ovaries, and do not need to take drugs. I would definitely have had a hysterectomy if I had great evidence that it was adenomyosis but I would have kept my ovaries.

    Take your time to consider your options and what you feel comfortable with - if you need to seek a second opinion then make sure it is a gynae who specialises in endo rather than ferfility or better still an endo consultant surgeon who will not view endo purely from a gynae perspective as endo is a condition of the peritoneum and not just a gynae condition.

    All very best wishes x x

  • No harm in waiting so you can do your homework. So long as you have the means (painkillers) to cope with the pain while you decide what's best for YOU rather than what's easiest for the surgeon. or most profitable for them.

  • It feels like I've put on the hyster list to just shut me up, with no real discussion as to how I may try to manage it, even for a few more years, I have time though to think about this though, the waiting list is at least six months apparently, and I will be seeing the consultant regularly at his endo clinic so I can ask more as I go along.

    The hosp I attended is listed on the list of endo specialist centres, and I saw the consultant who is listed as the specialist, which is why I was a little surprised that he didn't offer any alternative surgery, all he said that it will be open surgery so he can remove all the endo at the same time.

    But thanks to you all, when I mention to my family that I may try and see how I go once all this lap stuff settles and see how the ablation goes too, they look at me like I'm mad, I get the why wouldn't you want a hysterectomy face/question lol. I think for now I will just let them think I will be having the hyster at some point, but in the meantime I shall be focusing on getting back to doing my walking and my exercising, I have my pain killers, I've recently started amitriplyn too, as I've hardly slept at all these last few weeks, sleep wasnt that good before lap but its been awful since, and they have made a difference, but am struggling with dizziness for a few hours after I've got up so have taken it earlier tonight.

    Thank you again xx

  • I don't know about you but a hysterectomy scares the living daylights out of me. And removal of my ovaries, well what can I say, unless it concerns cancer there's no way on this earth I would CHOOSE that option, but I know everyone is different and it is ok for people to say things and give you a look like your mad because you are considering other options. Women should not be encouraged to choose to have their future health ruined by such drastic operations like a hyster, apparently your ovaries carry on working after menopause, in a good way. We need them for our old age, they don't just stop working after a certain age and we are always exposed to estrogen and still carry on producing it but at a much lower dose in older age so we will always have it in our bodies. There are other options like having endo cut out and saving all your vital organs. If you have a hysterectomy it would only get rid the endo on your womb and NOT the endo on your bowel, bladder and other places. The only way to get rid of endo on your bladder and bowel is to cut it out from that area or have your bladder and bowel removed and your not going to have them out are you. So what I am really trying to say is that a hyster and removal of your ovaries is NOT A CURE!!!!! Please think carefully about this. I know a lady she is 47 and had a hysterectomy 12 years ago, she said she felt it was the best thing she has every done, at the time, for the first few years but now endo is back with vengeance and it has been for about 6 years and she suffers terrible pain because it is back on her bowel and bladder. You see hyster is definitely not a cure, only a temporary fix. X

  • i'm sure that my family/friends think i'm prolonging my agony, i think they think i'm almost enjoying this condition, i know they dont think that but you get what i mean, they really dont understand why i'm still undecided. i just think i owe it to myself to wait and see, as much as i hate the everyday pain and then the more worse pains, i would rather live that way and save myself from possible other conditions in later life, i could well be wrong but then so could they - im going to ask at my next appointment if i can have just surgery to remove the endo, i guess like you say they probably go straight in for the hyster at my age to save money long run xx

  • They may tell you they can't remove all your endo. They say they can't remove all mine and want me to do full hysterectomy and oophectomy too.

    However, I am going to try to last it out until natural menopause happens, whether I'll make it or not I don't know, things have been bad this last month.

    Of course there is always the option of trying the zoladex for 6 months, to see how much the pain is reduced and to 'experiment' with early menopause, but at the moment I'm like you, I am coping just about and in a way it's better the devil you know. After all, I've put up with this for 30 years, I reckon I stand a good chance of making it through the next five or so, especially as the Mirena has stopped the heavy bleeding.

    I am certainly going to take some time out to research the role of the ovaries after menopause and the progesterone/oestrogan (can't spell today, sorry!) relationship as mentioned by someone above.

    Best of luck, this is a big decision and it is your body, no one else's. Take your time over any decisions and just try to ignore other people, unless you have this you have no idea what it feels like so your family can't possibly understand.

    xxx

  • Hi, I just read this post after replying to your other one earlier! All my local hosp could offer was a hysterectomy, having read about so many people having one and still having symptoms I went to a specialist centre. The gynae there said what good is a hysterectomy if endo is left in there? It's such a difficult decision. I know someone who has just had a hysterectomy and feels fabulous, who am I supposed to believe? Which gynae is right? Who knows!!!!!

    i would say though that prostap is worth a go, the side effects are manageable with hrt and without the injections the last 2 years would have been unbearable. They really helped deal with the cramping pains, pmt, low immune system etc. they have just put a mirena in and stopped the injections, I am dreading it all coming back. If it does I will probably have the hysterectomy out of desperation xx

  • Hi

    They can remove most of your endo if you see a good endo consultant. There is a technique called "total radical excision" which strips out the whole lining of your peritoneium, removing all seen and unseen endo, (as raf as possible). The frustrating thing is not many consultants can do this op and usually can only offer excision where they remove patches of endo. this is greaat if you do have patches but, if endo is extensive, you will need a lot of patches removed.

    Re Ovaries: Have a look on the website of Dr A K Trehan. Endo consultant surgeon, as he is against removal of ovaries for anything other than cancer. Mine were in a very poor state but he resectioned them and removed the endo, unstuck them from my bowel and then did a procedure called "temporary ovarian suspension". this is a large looped stitch that pulls the ovaries forward whilst the peritoneum heals following excision surgery. A week later the stich is removed and the ovaries fall back into place with far less change of become re-adhered.

    The ovaries are not just for reproduction, they do produce hormones that your body uses long after menopause which protect you. If it really would cure endo then it might be worth the risk of losing them but sadly it does not cure endo. I believe removal of endo itself is the way forward until something better is discovered.

    It is outdated thinking that removing the ovaries will stop estrogen and stop endo. We get estrogen from food, from the environment, store it in fat cells apparently. I recommend a read of a book by Dr Michael Lam "Estrogen Dominance". Estrogen dominance does not mean too much estrogen but that there is too little progesterone compared to the level of estrogen to balance out the effects that estrogen can have if untamed.

    The book says that we all have estrogen receptors throughout the body and, depending upon where we have the strongest receptors, symptoms of an imbalance will differ from person to person as it is mooted to contribute to fybromyalgia, fibroids, cervical erosion, osteoporisis, peri-menopause symptoms, post natal depression (where progesterone drops rapidly after birth), female cancers, prolactinomas, and yes good ol endo.

    It certainly made sense to me as I have had over time a cervical erosion, a prolactinoma and stage 4 endo. Many ladies have fibroids of fibromyalgia etc. aswell as endo. Seems it could be more likely that, rather than lose ovaries, we just need a simple test earlier on in life to check for an inbalance between the two and extra bio=identical progesterone (not synthetic hormone) if there is estrogen dominance. Could it really be that simple! I am convinced it probably is! So why does the mainstream medical profession not recognise this? Apparently it is because bio-identical progesterone cannot be manufactured by the pharmaceutical companies and is not patented. Medical training/treatments, so I understand, follows what the pharmaecutical companies can offer as treatment so bio-identical hormones are not included in that sphere. Hopefully the day will come when, instead of taking 10 years to get a diagnosis (with endo often being advanced by the time doctors take you seriously instead of saying you have IBS, waterworks infection etc) they will take a preventative approach in the first place. I will be interested to see if over time estrogen dominance starts to get recognised or whether I have just been taken in by a good book!

    Regardless of this theory, have a look at Dr Trehan's throughts on the subject of ovary removal which might help you with your considerations and also arm you for discussions with your own consultant.

    Best wishes x

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