Sorry for this all but I seriously need to rant...........

Is anyone else suffering from the pain and feeling that it's just not bloody worthwhile waiting for doctors or others to come up with a solution which never seems to be on the horizon? I turned 42 a couple of weeks ago and aside for a period of six years post hysterectomy in 2004, I seem to have lived a life in pain. I began my periods at 11 and was diagnosed at 21 though the problem existed since I was about 14. I now need a rollator/walking stick and have a disabled badge but (because of my husband's income) cannot get disability allowance meaning I have to work through it. I know I'm lucky as I can work from home sometimes but....I'm asking myself what's the point if I only work to pay bills and have no social life, no sex life and no pain relief in any substantive way????

Also, another thing that winds me up and I find this really irritating is when people who found a change in diet or increased exercise helped say to me I should do the same as if I haven't already tried that. Besides which, if I'm just short of going into a wheelchair, what the f*** am I supposed to do in terms of exercise - I find going upstairs to bed exhausting?! Don't get me wrong I'm glad they were helped but really don't assume we all have the same level of disease or that one thing will help all sufferers.

I soldier on through everything but I'm beginning to really see no point; I can't talk to my mother as she's worried enough so I just say I'm ok or "THE USUAL" to help alleviate her concerns. What friends I did have began to drift away because of the constant inability to socialise, and my husband and I have stopped having any real relationship because I can't stand the intimacy (as being touched just annoys me) and sex is out of the question. We did try other forms which worked but to be honest, I'm just so tired and/or in pain all the time I can't be bothered with it. I have had four miscarriages and no have no children and despite the hysterectomy and oopherectomy - which I don't regret - I'm so sick and tired of being sick and tired (make sense?) I really can't face another ten or so years like this and seriously if I could afford to go to Switzerland and pay for that clinic to give the drugs to end it all I think I would...even having my gorgeous cats isn't helping me... this SUCKS!

I'm under the pain management clinic who seem to think that talking about pain will somehow reduce my pain(?) and having spent thousands of pounds all over the place and seeing NHS specialists, there seems to be no bloody end. I'm so fed up...

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5 Replies

  • Oh no! This made me so sad, I wish I could say something useful. I totally understand how frustrating it is, to be treated like we are all the same. Its great if someone finds something that helps but its not going to help everyone is it :(

    You must be totally peeved off and that's putting it nicely. Can't imagine how I would cope in your shoes.

    Try and be kind yourself. Is it worth seeing anyone else? Is pain management the route when there is no further treatment options?

    I really hope you feel a bit better soon, lots of xx

  • Hello maria7800. I'm so sorry to hear you are having such a difficult time, I do really empathise with you and feel your frustration lots of us are struggling in various ways and at different stages. Some people can be really ignorant, and what works for one doesn't work for another with many other chronic illnesses too. When you are trying your best it's not what anyone wants to hear :-( - my advice would be to try and learn to let it go over your head!

    Just wondering if I can offer any help with some advice and suggestions though! A hysterectomy and removal of the ovaries as a treatment for endo is an old fashioned notion, and often doesn't provide any relief or not in the long term in some cases The leading experts now believe in removing the disease not the female organs. Have you ever seen a good endo specialist, and when you had your hyst did they properly treat the endo ie excise - cut it all out at the same time? If not I would be considering asking for a referral to one of them off the BSGE list, please be aware that some are a lot better than others so don't just pick the nearest and do your own research on them before deciding where to go.

    I also think you need to get some proper advice re benefits as I don't think? your husband's income should affect your entitlement for some of them. Try and contact one of the charities / agencies that deal with this such as or the citrizens advice.

    Hope I haven't wound you up more.... with my suggestions... lol! Just trying to help, take care :-)

  • Hi Maria

    I think anyone reading your post will have had the same stab in their heart as it is a place most of us have been or, sadly in the case of many, are still in. I particularly relate to your comments as to what you tell you mum as I was just the same - to protect her feelings when I was the one who felt there was no point in existing. And gradually seeing 'friends' drift away. But often we have to hit rock bottom before somehow finding a way out.

    I can't see a reply to the message I sent you a month or so ago. You have stage 4 endo and are now incapacitated with pain in your legs, with sex and no doubt everywhere. You don't say what surgical treatments you have had other than the hysterectomy and BSO that you had 11 years ago at age 31 - whether you have had any laps to remove your endo or whether those treatments were given at that time as the only solution and nothing has been done since. If that is the case then I do think there is a good deal of hope that your situation can be much improved by more appropriate treatment now by the proper specialists.

    The hysterectomy and BSO raise various issues. There are many theories on the origins of the tissue that becomes transformed into endometriosis by the as yet unknown trigger that turns it into a disease process. But it is now generally believed that retrograde menstruation (back up of menstrual blood and endometrial debris into the pelvic cavity) is the source of peritoneal endometriosis, the form that grows and spreads. So in theory removal of the uterus is thought to stop new endo from this source. But endo itself is not actually that common on the uterus and as we know can be found in many places. So the first issue is what happens to that endo when the uterus is removed. The usual remedy was to remove the ovaries in the hope that it would regress once no longer fed by the oestrogen (oestradiol) they provided. But endometriosis is determined to survive and is equipped with the means of producing its own oestrogen within its own cells by conversion of cholesterol in the blood which is the base molecule for oestradiol. This is done via a chain reaction involving enzymes, the most important of which is called aromataze. Other body tissues can do the same, including fat tissue and the main source of oestradiol (which is very important for health) in post menopausal women is fat tissue. Endo can also take advantage of this source. So although endo is so often still referred to as a disease of women of child bearing age it is not. Post menopausal endo may be quite uncommon, but it does exist. In my case my endo only developed after hysterectomy and BSO.

    A critical consideration is whether you were given oestrogen replacement. Post menopausal endo in women on oestrogen replacement is associated with a very aggressive form of disease in which the endometriosis cells have been found to have huge amounts of aromataze in order to provide themselves with lots of oestrogen to feed themselves. The puzzle is why would they need to do this when already being provided with it in the form of oestrogen replacement? I have thoughts on this. There are very few papers published in the scientific journals on this form of endo but I have several from searching when I knew I had this. I was put on huge levels of oestrogen (the equivalent of permanent mid cycle levels) for 5 years and when my post menopausal endo was found in the form of a huge, extremely aggressive cystic mass that had ruptured 4 times, the radiologist said it could not be endo and prepared me for aggressive ovarian cancer presumed to be caused by a remnant left after the BSO. It all turned out to be this aggressive form of endo arising in the Pouch of Douglas. At the time of hysterectomy and even at the open surgery to remove the huge aggressive mass there was no sign of any other endo anywhere. I then went on to have stage 4 everywhere - bladder, ureters, bowel - and was packed with adhesions and required a 6 hour surgery 4 years later at age 55, assumed to be caused by new endo from the spilled contents of the mass rupturing so many times and the rummaging of the general gynea.

    If you have had no surgical interventions other that the hysterectomy, or have perhaps have had incomplete attempts in general gynaecology (or even by specialists) then it is very likely that you have continuing endo after surgical menopause whether or not you were given oestrogen replacement. This is now likely to be associated with multiple adhesions binding organs together and crushing nerves to cause you literally crippling pain. Although you may still have endo growing, this pain is caused by fibrous tissue and not by oestrogen and so no amount of hormone meds (you need ovaries for them to work), holistic measures or pain management are likely to have any significant effect. The medical treatment for post menopausal endo is aromataze inhibitors to stop the production of oestradiol in the cells of the lesions themselves and in tissue such as fat, but these are not without risks as they reduce bone density in the same way that GnRH agonists do in pre-menopausal women.

    You need to be seen by the most expert of experts – I’ll pm you to support you in finding some better treatment than you are getting. X

    Apologies for the long reply. Post menopausal endo may be rare and as a consequence is poorly reported in literature but an understanding of it by GPs and gynaecologists is so vital for those affected. I had a long post on about it but it was removed.

  • I understand how you feel. My life is completely ruined by chronic illnesses, pain and disability and I do wonder a lot of the time: what's the point of existing/struggling on. I sometimes feel as if I'm only keeping going for my parents (who I live with) and once they are gone I can go too - never admitted that before.

    If you haven't applied for PIP, that's one to look at as it is not income based. It might help a wee bit. I haven't applied, but I did read (when looked into it) that the Benefits and Work forum (google it) is very helpful in filling in the forms. As you have a Blue Badge you should be entitled to mobility help.

    I wonder if there is anything else going on health wise that might be making you feel so ill. Have you had any recent blood teats for vitamins such as D3 and B12 or Ferritin (iron)? Also your thyroid? Quite a few women with endometriosis have a thyroid problem too (I've noticed this, and I'm one of them) and it can really make the exhaustion worse plus cause apathy and other mood disturbance.

    Anyway, I do think colouring (in adult colouring books), jigsaws, puzzles, time with pets, journalling, scrapbooking, knitting, learning to meditate etc can help to cope. Gotta focus the mind on something other than the pain and subsequent misery. Something repetitive and mind numbing helps me a bit.

    With hubby - can you hire a mobility scooter and go out with him somewhere? National Trust are quite good for disabled provision. Starting to spend some time together out of the house might rekindle a little love, plus it is good to get out of the four walls, though whatever you do has to be good enough to compensate for extra pain you might experience from doing it. You could also show him you care in other ways than physical intimacy & touch.

  • Thanks for all the replies; I had actually just wanted to rant not expecting anyone to reply. My job is to research so I have undertaken extensive research on issues around this disease and seen various specialists. I've spent time in specialist clinics in Switzerland, France, the US and Canada as well as here in the UK but I admit I have not sought anything more since 2004 as (until 2012) the symptoms were minor. I know that stress is a major factor and unfortunately my stress levels are very high (just one of those things) and have been since 2010.

    As to retrograde bleeding I do think this was a factor as even when they began they seemed to be minor bleeding; I don't agree with some research which states that sex or tampons are the cause - I began using tampons at 22 and didn't have sex until I was 19; my pain/symptoms began when I was 15. I honestly believe it is linked to the amount of milk I drank - normal milk as we know (hopefully) contains a substantial amount of hormones which are given to the cows to ensure they continually produce and - as a child - I would drink around 4 pints a day which - in those days - was considered healthy. When I switched to a mostly organic diet post hysterectomy I had no or minimal symptoms, particularly pain. When we moved to Germany where organics is not readily available not least where we were living, I noted my health deteriorated relatively quickly and within 18 months of residency my symptoms were close to pre-surgery.

    I have had laparoscopic 'laser' treatment (x 7) between 1994 and 2002; two open surgeries lasting well over eight hours each to remove the 'disease' and to detach my uterus from my bowel, ovaries from the pouch of douglas and removing various nodules of endometriosis from other parts of the internal pelvic area. My uterus was also turned backwards and almost upside down which again they rectified; my bowel wall had some of the endometriosis removed but they couldn't get it all as I was beginning to respond badly to the anaesthetic having been under for about four hours longer than anticipated. The surgeons were all surprised at the level of disease given my relatively young age at the time (in my early twenties) and with the rapid return of the disease after each surgery but again, I didn't find a link between milk and hormones until I was about 28.

    As for changing environments, this is difficult; I do walk as and when I can and to be fair, my husband attempts to involve me in things but I put all my energy into work and saving what good days I have for that. Work is the only thing that keeps me sane and I'm reluctant to give it up. For the things I am interested in, there are not many places which can accommodate disabilities or the cost is prohibitive now I no longer earn the salary I used to. I have tried numerous and a multitude of things to address this disease though I cannot (and will not) write them all out.

    Thanks to all for the replies some of which were very detailed however, sometime a rant is just that.....!! I hope this doesn't sound unappreciative but I really just wanted to get this off my chest and that's all...sometimes it's just nice to vent without someone (as I had to frequently tell my mother and husband) trying to fix me.

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