Things are getting much worse now :(

I had my first lap in november 29th and since then have been in much more pain than i was before. It took me yrs to finally get docs to do something. It was found i had severe endo, both ovaries pulled in and stuck to my bowel, endo between my womb and bowel and endo as far down as my cervix. I was told once awake that most was removed and my ovaries were saved and put back into place.

I had an MRI scan after my lap which showed i still had endo around and that my right ovary has lots of little deposits of endo which is deep rooted and cant be removed surgically. I was then put on decapeptyl which some of u may have red an earlier question about it due to me suffering severe side effects. I was then moved onto provera and after 4wks and being in constant pain my gynae said i need to try danazol as its really good and not many suffer side effects. Ive bn on danazol nearly 2wks and had horrible side effects again and ive had enough.

After having time to think about things i have realised that they have never really explained the outcome of my MRI scan and keeps telling me i need to be on some sort of treatment.

before i suffered terrible painful and heavy periods for a about 2wks a month, but now i have constant lower back pain and worse on my right side, the pain has been going right into my pelvis and down my thigh like the pain u get when u have ur periods but this is more intense. I would rather have another lap instead of all this shitty hormone treatment but i think people think im nuts. Ive been told i may lose my ovary but im now at the stage where id rather lose it if it ment less pain.

Sorry for the story there but i just dont know what to do at all. I feel ive tried as ive bn on some sort of treatment since jan and have not had any good changes from it.

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  • It seems we go all these years having these pains and symptoms, at times being made to feel we are imagining it, and then finally we get our lap and diagnosis, and it's a real mixture of emotions, because yes we now have a reason as to why we have been in so much pain, and no we're not going insane or imagining it but then it seems, from what I'm reading on here, that even with a firm diagnosis that the majority of us are still wondering what's next.

    I think you know I had my lap nearly two weeks ago, I got diagnosed with severe endo, and in all the places we don't want it, it was the one piece of news I dreaded, I really didn't want it yes I wanted a reason but endo was one of the few things I did not want diagnosed. So far I only have been told severe endo, where it is, too much to treat at time of lap and have been told to have hysterectomy inc ovaries, I have no problem with having that op, not really, I'm 41 and have grown up/teenage children, but I need to know that they are going to try to remove the endo at the same time and I get the feeling that they won't. They did mention six months of fake menopause but I don't really see the point of this, if it can only be given for six months it's just delaying the inevitable surely? And I'm just not keen on having hormonal treatment, as even with the mirena I suffered side effects.

    and I know I'm much more early days regarding my lap, 12 days post op, but like you I'm in far more pain than I was before, initially I had the actual lap pain with the sterilisation and ablation pain, but since around day 6 I've had the most chronic lower back ache ever, the worst it's ever been, and more intense on my lower left side front (the usual problem place) I've just put this down to the possibility that maybe they disturbed things in there and the fact that no endo was even treated so it makes sense I won't feel any better then pre-op but I certainly didn't expect to feel worse.

    I'm lucky that my next consultant app has come through already, it's on the 9th, it's the consultant who stated to my gp that 'it is possible she may have endo but on balance it is very unlikely she hasn't' so I'm not looking forward to it, and like you say no doctor ever seems to fully explain things to us. So many people now think I'm better now I've had 'my op' they don't get that nothing's actually been treated and that I'm pretty much in the same position as I was, worse now pain wise, the ones that know I've been told to have a hyster are saying oh yes good job get it done, why wouldn't you, they don't get that unless the endo gets removed it probably won't help, and I don't think I'm going to put myself a big op like that unless they are going to try to remove as much endo as they can.

    Sorry it ended up a long one, and that I've not really offered any helpful advice, but more of I've just ranted on - what's your next move? Are you booked to see anyone? Xxx

  • Just to say that the reason they say do the hormone treatment for 6 months is so that they can tell if the total hysterectomy will help - basically the hormone treatment chemically shuts off your ovaries, but can't be given long term so, if you try it and that gets rid if your pain then they will surgically remove your ovaries.

    I'm in the same position as you, some endo removed but not all, still in lots of pain, told to do the hormone thing and total hysterectomy but don't want the side effects.

    I've said 'no', requested my notes so that I can be clear about what the situation is now and am going to hope for early natural menopause and try to manage my symptoms until then.

    Having said that, things got a lot worse this week so I may change my mind.

    Two weeks is very early after your lap though, there's no way you have healed yet so fingers crossed that things get a lot better over the next month or two. You could also try a Mirena, I had a rough few months with it, but now although I still have endo period pain, I don't have periods and it is a bit easier to cope.

  • I had the mirena removed at time of lap, I kept it in for 18 months but it didn't help the pain, and yes I suppose that makes sense about trying the hormone thing but I get scared trying these hormones, I'm so obsessed ill lose more hair, I know it's silly but it really gets me down that the mirena thinned my hair xx

  • Hey really get all the information about the hormone treatment and only agree if u are really sure. Ive had an shit time since jan and if i knew how it could effect me i would have said no. I am not the same person just now and i want to feel normal again. I constantly feel unwell, emotional and generally out of sort. I suffered alopecia 4yrs ago and got my hair bak after 2yrs and its been fallin in and out since, i believe that all this hormone treatment is making my hair come out more as its thinning all the time and im losing alot when i wash it. This may not happen to u and it could be a miracle drug for u, but just think about it seriously before u do. wasnt trying to scare u im just being honest. xx

  • you haven't scared me, its good to hear others experiences, and although i will hear what they have to say on it, my mind is pretty much made up that i wont go for hormone treatment, i seem to suffer side effects of most drugs, even the pain killers, and like i said the mirena, if they can say they will try to get rid of the endo at the time of the hyster then I'm going for it, apparently the risks of no hrt/no ovaries is low once you reach 45, I'm not far away from that anyway xx

  • Yes i want the endo removed too and if it means losing an organ then i will have to do it. :) thanks again xx

  • I had the mirena coil fitted 2 months ago and I have lost at least a third of my hair. Is there any evidence that it settles over time? If not I need an alternative remedy to heavy periods :(

  • Hey sorry to hear ur in the same position. Yes im also wanting to see my notes as im not clear of whats going on in my body either n just by what they tell me. Ive hated the hormone treatments and feel its just prolonging anyones suffering as after months u'll be bak in the same situation. Hope things work out for u xx

  • Hey no worries rant away and yeah i remember, and its so annoying that they say what can be done but ur right aslong as the endo is there having everything removed wont help unless the endo is gone. Did u have bad side effects from the mirena? I was maybe going to try it as the last time i had it fitted it had falling down into my cervix with a few days and it took docs 3wks to remove it. so havent had a chance to see if it helped. I would be the same as u, there is no point going thro a huge op if ur still going to have issues after it. waste of time and money. I thought i had an infection after my lap as the pain was getting worse, they kept saying they've done alot of work in there ur bound to be in a lot of pain, 4months later and the pain is worse! I dont want to live on painkillers and struggle thro my days im only 31. People will never understand, i get what u mean about uve had the op so people think ur cured.

    Im back at my gynae on the 11th, i want to tell him ive had enough of hormone treatment and its making my quality of life suck, I want another lap or even an MRI scan to see exactly whats going on, oh and i want my last scan explained properly. When i came round from my lap he said most was removed but there was a large mass between my womb and bowel so needed MRI scan, when results came back he said there was nothing showed up apart from some sticky bits of endo, WTF does that mean.

    Ive went to my app's on my own aswell so i think they know they can say anything to u. I will have all my side effects written down and all my questions and hope for the best.

    Hope ur ok xxx

  • My mirena was in for 18 months, it was only the last 2-3 months I felt it was ok, it made no difference with pain, but the last few months I finally started getting periods, they weren't regular and sometimes every two weeks, but it was a period as to everyday light bleeding and still then a heavier period. Don't get me wrong, the mirena reduced my bleeding to manageable level, where I could just wear tampons and actually go out, this enabled to start walking/exercising and lose the weight I needed to lose for lap.

    I'm taking my sister with me to my next appointment, first time I've taken anyone in with me, in the hope she will take everything in and remind of anything I might forget, although I'm going armed with a list lol.

    Hope ur ok too xx

  • think i may have just answered ur other post lol. Bit confused haha. :) Anyways im glad ur sister is going with u as im sure it helps, my apps are always when someone is wking so i need to go alone, but will defo be ready for this one, with questions written down and all my side effects down too so i dont forget. xx

  • i lost one of my ovaries which was endo riddled and giving me all sorts if cyst problems, and I've not had any problems with it not being there. It just isn't there anymore so that side doesn't have cysts and doesn't have any issues where for many years it did do. The ovary remaining also had a cyst, the cyst was removed and it has since grown another which has given me some troubles but not nearly as strongly as the old removed one had done.

    You can live perfectly healthily with just one ovary. I don't even think about t not being there anymore, unless I read posts like yours.

  • What about living without both ovaries? It's is the bit I'm confused about, they say that it's best not to have hrt when ovaries are removed cos of endo, but then what about the risks of osteoporosis and heart disease, which is what apparently you are at risk of if ovaries removed before 45 and no hrt xx

  • If both ovaries are removed, HRT could trigger the endo , which is harder to treat as you'll have more scar tissue. However, it's preferable to having your uterus removed as well, as if the endo recurs after this it's extremely difficult to treat - I know some women who are much worse off after a hyst.

    Probably they would want to monitor you carefully for osteopenia (early osteoporosis) and any other conditions that may occur without HRT and take it from there.

    However, if both ovaries are removed, you'll go into surgical menopause which will be similar in terms of side effects to the treatments you've been on, but without the option to stop it. If you've suffered very badly with the side effects of prostrap, it's likely an instant surgical menopause would cause the same problems.

    This is why they desperately want to keep your ovary - if they remove it and you get a large endometrioma on the other or similar, you will have to lose the other.

    I have heard of specialists resecting areas of an ovary rather than removing the entire thing - there are some people who have their ovaries removed but a tiny bit is left behind in an adhesion or something and they still have a cycle (it's called ovarian remnant syndrome). This suggest that, maybe if they removed the damaged areas of the ovary and later had to remove the other ovary completely, you may still produce oestrogen. I would maybe do some research into this and speak to a specialist - even if you're under a gynae locally who has a special interest in endo, you need to be seen at a specialist centre like the JR in Oxford where they deal with the most severe cases.

  • so far they havent said much, except full hyster including both ovaries, am hoping i will find out more details next week at appointment xx

  • Hey if i was to lose an ovary do i need to go on HRT? did u have too? xx

  • If you lose one, you won't as the other is enough but there's always a danger that the other one could develop problems - if you lose both, that's when things become more difficult.

  • Sounds all to scary, think i need more info from my gynae xx

  • Thanks i was shocked when i thot i could lose it but after weeks of more pain im now thinking its best to get rid. I dont want to prolong anymore suffering of crappy treatments just to last a bit longer. I am not in a relationship and not trying for kids and find sex difficult anyway so im buggered if i can have kids anytime soon. I need this sorted and i hope my gynae listens to me when i go. xx

  • Dear Lynnie,

    so sorry to hear about everything u say , the only comforting thing I can say , that my cousin had total Hysterectomy , and refuse to take hormone treatment after , years ago , she is absolutely fine now and no regrets about at all.

    God bless , wish U better .

  • Thank you for that. Yeah ive been feeling bad like im in the wrong for not wanting to continue with this treatment but why should i feel bad about it when its myself who is suffering. Thanks again. xx

  • The sticky bits of endo are probably adhesions (scar tissue) that forms in response to endo lesions and inflammation. It oftens glues other adjacent organs together. It often comes hand in hand with endo. Endo in itself is a painful horrible condition but adhesions can cause as much pain. I have right sided pain deep inside my hip about an inch above where my menopausal shrivelled ovary should be. I followed the old pelvic scar and the pain seems to radiate from about an inch to an inch and a half above the end of the scar and originates so deep that I have to press it hard to feel deep pain. The Gp tells me this is likely to be adhesions rather than endo as I have been through the stomach injections which failed and am now in menopause. Every single morning I wake in a haze of pain, bladder pain which forces me to run for the loo to slightly ease the pain. Then for the rest of the morning especially when I sit, I can feel this deep pinching right sided which radiates round my right hip and seems to affect my bowels too and low back pain. I often have to twist and contort the lower part of my body into strange yoga like positions to try and stretch out the sickening pain before I can even get out of bed - does that sound familiar to anyone? When I eventually get going which takes me ages due to fatigue, pain and general body ache and stiffness and 3 trips an hour to the loo it slightly eases when I am upright and walking - it's so wierd! It never goes away I am always aware of this pinching in my groin. It even pinches after eating and makes me feel sick sometimes and tight waistbands kill me, so I live in baggy bottoms and loose pants 'lovely'! I too have had a radical hysterectomy mentioned to me but have got myself in a state of terror after learning it can make adhesions even worse! Of course some say if and only if you have a skilled endo adhesions specialist surgeon who performs aggressive surgery to remove every single deposit and adhesion it may just work. If you can imagine a woman has organs packed tightly in a small space with lots of nooks and crannies. Now imagine little black/blue endo deposits which look like caviar sprinkled in different places ie ovarys, fallopian tubes, bowel even bladder, cervix and as in my case stomach too, then on top of that picture someone squirting glue around your organs which form stringy filmy adhesions (scar tissue) which attaches like a spiders web or cold spaghetti to other organs and it gives you an idea how complicated it is to eradicate every bit of sometimes hidden endo and adhesions! It of course depends how much and where it all is. If it is in one area it is usually easier to remove but if it's widespread or in places such as the notoriously hard to reach 'pouch of douglas' it is even more difficult to get at! This is why it is rather essential to have surgery done by an endo adhesions specialist. Although even a specialist surgeon can struggle with extensive endo and adhesions you have a better chance of having it all removed! That is why they often approach complicated cases with aggressive surgery and even bowel ressection where a bowel surgeon is also present at the op. To finalize, I am still deciding what to do as it is a big op to have and no guarantees more adhesions won't form. Adhesion barriers and careful handling of organs is key. The NHS apparently uses a barrier but not the latest most effective one on the market due to cost! (this was indicated at a talk by a specialist endo adhesions gyne)!

  • Hey thanks and yeah i believe i now have adhesions that may have already glued my ovaries back together again, i dont know but i know that being in so much pain isnt normal and its telling me something, I knew all these yrs that something wasnt right with my periods and 10yrs down the line i was in a bad way because they do nothing. Im sure my consultant is a speacialist but i am going to find out as i need this sorted. Im only 31 and dont want to be like this for the next 20yrs. Its a massive thing living with endo and people just dont realise how painful it is,, the thot of constant pain and ops is depressing and what man will want a relationship with someone who is always in pain, needs ops and possibly cant have sex :( hate this bloody disease. xx

  • Just to add, I don't have sex with my husband at all - when I took zoladex for too long without HRT, my libido went an its never come back again. I also have ME and I've had to stop working due to pain and fatigue - he supports me financially, he takes care of me and he's not going anywhere. Dont get me wrong, it has been hard at times, but don't think that no-one will want to be with you as that's not the case.

  • Its the finding a partner who would be understanding from the start, i so want to have sex again but its impossible just now. I hope i can get it sorted so i can eventually have kids xx

  • I understand how tough it is - I was diagnosed in 2004 and have constantly been on hormonal treatments and morphine since then. It's very hard to cope with sometimes.

    If you have deep-rooted deposits in your ovary that can't be removed via surgery, this would be why they want you to take something like zoladex or danazol - they are hoping that by cutting off the oestrogen supply, these deposits will die off. That may happen, or it may not but these treatments can be very effective. I was on zoladex for two years (not advisable but nothing else helped) and the side effects were difficult, but after a couple of months it helped so much with they symptoms that I lived with it.

    I'm surprised they told you that danazol has fewer side effects as that's not my understanding - its a different kind of drug to prostrap etc, it does something to testosterone levels and can cause your voice to become lower, facial hair and various other masculine traits. This should really have been explained to you.

    I would take a two-pronged approach - I would try zoladex with HRT if you haven't tried a GnrH with HRT before as that should help with the side effects. I'd also ask for a referral to an endo specialist with more surgical skill who may be able to help more - the team at Oxford are very good if that's anywhere near you.

    If you got no relief from the first op, that may be because they didn't remove all endo, and maybe because the surgery caused adhesions which are causing your worsened pain. Lots of endo sufferers need regular surgeries but the surgeries themselves can cause us more problems - increased pain from nerve damage and adhesions, bowel and bladder damage etc. If you can tolerate a short course of zoladex or similar, even if it's with HRT, that might calm things down enough to enable you to manage just on the pill (probably tricycling at least). Courses are usually 6 months, but some studies have shown that a 3 month course may be just as effective - I would do it for as long as you can manage for up to 6 months, it may help and mean surgery can be delayed. If you do ask for a referral to a specialist, you could be waiting a long time for an appointment and especially for an op, so this may help in the meantime.

    The likelihood is that you're going to need to take some form of hormonal treatment for a long time in order to control the disease - if you can take something like zoladex for a few month and find a way to manage the side effects, it could enable you to take a much milder treatment (personally the pill is the only type of treatment I don't mind as I don't suffer side effects and can stop taking it or change it whenever I want) for quite some time. HRT can help with side effects, as can things like anti-sickness drugs if you struggle with nausea, cool packs or 4head can help with hot flushes and so on.

    I know you're really struggling at the moment but you will start to find it easier to cope - we all have good and bad phases.

    It sounds like what you really need in the short term is better pain relief - are you on prescribed painkillers and have you been to a pain clinic? If you're in pain daily, you should be on a slow release painkiller that lasts 12 or 24 hours (tramadol or morphine probably) and then have a fast acting version for breakthrough pain when you need it. On top of that you can take paracetamol and anti-inflammatories, and possibly things like anti-depressants that are prescribed for pain control. If you don't have that, you need to see your GP.

    I hope things improve soon

    x

  • Hey thanks, yes ive tried decapeptyl altho not for long as the effects were awful and effecting my daily life. infact i felt like someone had took over my body. I do believe i have adhesions as they pain is quite severe and not going away. I feel like someone is standing on my ovary and not moving, only way i could explain it lol. I was given tramadol but didnt take to them either so im on co-codamol but cant take anything stronger during the day because im at work. Im not doing to well on danazol either so just had enough and want to stop with any treatment, it will only put endo to sleep for a few months if it worked but id be back in this position eventually, not sure all this hromone crap is worth just a few months. Been given an anti depressant sertraline because i am suffering bad with anxiety and depression but havent took the tabs yet because im scared of the effect or side effects i have take it along with danazol. Im sure my gynae does a pain clinic so will chat with him when i go cause this cant go on, thanks again and i hope ur doing well. xxx

  • The treatments won't necessarily only help for a few months - if you complete a course (usually 6 months) then go straight on the pill and only have a break every three months, this will limit your bleeding and stop the endo from spreading, and can keep it at bay for a long time.

    If you didn't try HRT with these treatments, you should try that as it can really help with the side effects. I'm not sure about danazol as its the only thing I haven't had.

    If you couldn't tolerate the tramadol, you probably started on too high a dose - you can get a soluble version which means you can control how much of a dose you take. If the co-codamol isn't strong enough, that's an option - these drugs can make you drowsy at first but you will find that stops. You can also take an anti-inflammatory like voltarol with the co-codamol.

    Your GP or gynae can refer you to a pain specialist - they're anaesthetists who specialise in treating pain. You will find this all easier to deal with if your pain is managed better.

    Xx

  • I was on livial 9 (hrt) and still had hot flushes, im getting hot flushes with danazol but he said i wouldnt need hrt with this treatment. I would love if they did another lap to remove the endo they didnt get and then straight away have the coil or something else and to see how that would do. I cant stand the side effects and dont think they are bareable. I will contact my doctor about the pain, as today was a bad day, i couldnt even change my bed without having to sit down a few times, hate it. xx

  • Just to add, from my experience on anything codeine based Co Cocodamol or Co Drydamol (which I take). Codeine is very constipating and should really be taken with some type of stool softener or mild laxative when bad. I take Fybogel but also have to take Luctalose syrup or Fybogel and one normal strength Senna from time to time to stop the codeine making me hideously constipated which tends to go hand in hand with piles (sorry to be so graphic). I also have Diverculitis along with the endo history and adhesions. Drink loads of water too.

  • Thanks yeah im suffering constipation just now and the pressure feeling in my bum sometimes,i am managing to go but its not that good. I ahve lactulose but keep forgetting to take it so going to start again from 2moro.

    What is Diverculitis? Trying to drink lots but wow thats difficult. xx

  • Yes I suffer constipation, I take laxido sachets, apparently you can take up to 8 a day short term, 1-2 long term, I was taking 3 per day the first week post lap, now I'm down to one a day, it stops things from going too hard, have just had my first day since op without co-codamol or paracetamol, have only taken mefanamic but am in a lot of pain, keep having labour like pains, so will take a couple for bed time - I've increased my water intake, cut out Pepsi max (I was addicted I think) and on decaf coffee now, not sure if it helps but the extra water should help xx

  • I'm in similar situation, since my lap and dye op 20th December I am suffering more pain then before. I only used to get severe pain during period and heavy but now I get that plus lower back pain and hip pain and it occurs before after and during periods now. Feel so fatigue alot of time and so drained. They found endo under my right ovary and that's where I get lot pain, I'm on final written warning at work and I'm gonna end up loosing my job cos of this condition. I can't go on endo treatment due to trying for a baby but after 1yr 7 months of trying no success so they are going to be doing artifical insemination in several months time which will cause pain to be worse and it will be like going through the change. I work for the Nhs and I'm getting no form of support and my job will be taken if any more sickness, each month is unpredictable and when I can't go work I physically can't due to the powerful discomfort and pain.

  • Yeah at least we knew when our period was coming we could try and control the pain eh and it was 2wks max for it all. Now in constant daily pain and its awful. Im sorry to hear about ur work, some work places are just murder and have no compassion. I would have been sacked from my last job too. Been in new job a yr and my boss has been brilliant so im thankful for that. I hope everything works out for u with trying for a baby. Hope ur ok, hugs to u xxx

  • Shocking and appalling that the NHS should behave this way towards you! It clearly indicates the lack of knowledge of the debilitating effects of this chronic condition. If the NHS don't understand how this can in some cases cripple a woman who does? Sussex Endometriosis Support Group held a few meetings in the Royal Sussex County Hospital and I recall their being a leaflet about endo in the workplace and employers. I find this 'chilling' and very scarey!

    Changing the subject back to constipation issues related to this condition. I also find eating a few prunes daily beneficial together with stool softeners and anti spasmodics.

    The question about Diverculitis and what is is; it is a pouching of the bowel (it can form several pockets) fairly common in over 50's. It can collect faecal matter which can become infected and even dangerous (peritontis) if left untreated. It often happens due to ongoing constipation issues where the bowel gets weakened in places. Diet and stool softeners are essential to manage it but in some cases surgery is required to remove diseased bits of colon. I have a history of extensive endo, adhesions widespread (also in stomach), small hiatus hernia, Ibs (some dispute this exists) and prolapse. Something for sure causes right sided pelvic pain, pinching, cramp and hip pain, bowel problems, low back pain, fatigue, need to urinate often etc and now in menopause it continues. Reading peoples experiences which seem epidemic, this debilitating condition causes so many symptoms and chronic pain and there is no guaranteed cure. Early diagnosis is key but up to now it takes on average 7 to 10 years to diagnose it! Early treatment methods such as Zoledex/hrt can work for some by stopping it in it's tracks. In the past repeated surgeries where found to often cause worsening adhesions (scar tissue) unless performed by a highly skilled endo adhesion specialist who essentially manage to remove every trace of deposits and adhesions. Unfortunately most ops where performed by standard gyne's who despite their best efforts left hidden deposits in places such as pouch of douglas, which often go on to re accumulate and cause problems and repeated surgeries, it goes on and on. Hysterectomy if all is removed can work for some but can worsen adhesions for others, it is so confusing and frustrating.

  • Wow that sounds very painful that. Its scary when u hear other peoples experiences isnt it, i thought i was bad waiting 10yrs for diagnosis but alot of woman in the same position, If its so common then why are woman's life being ruined because doctors dont recognise the symptoms. My life has bn turned upside down since this was found. Im going to ask my doctor is my gynae is a specialist as i would get refered if he wasnt but i think he is. xxx

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