Dear Forum... Posted January 11, 2011 Share Posted January 11, 2011 I have a ever more serious problem with my OH. She basically suffers from a funny old disease called endometriosis. This over several years manifested itself as heavy periods until eventually it became unmanageable stomach cramps. Solution? operation to burn it all out. Since then she has bled and been in agony near constantly (10 months ago). She is back and forth from the docs and they have only tried two pills in the whole time and neither have helped. She hasnt been referred back to a surgeon/specialist type as yet. However over the last 10 months she has another problem. Everything! 70% of the time shes ill, if its not killing her with this silly thing shes got (something is wrong inside worse since the op as she is always bleeding and in pain wherease before it was just normal times but painful/heavy) then shes ill. Cold, flu, allergic reactions, migraines, you name it. Now she's never been like this before. She basically has a season ticket to the doctors and every time its ;stick with this pill see if the pain stops and you just have flu or have developed an allergy' etc. Now I'm no doctor and maybe its just a weak immune system due to the silly 'what's it' disease she has but I cant help but worry something more serious is afoot. This has been expressed and yet no tests have been done nor advice given. Mostly she is fobbed off with a practice nurse. I'm not one for grassing but I cant help feel that someone in her early twenties whom I've been with years whose been happy and healthy is all of a sudden ill all the time, surely though the symptoms change the root cause needs checking. The doctor in question is notoriously blasé locally. Also I am concerned about her not being referred back to someone whose a specialist and not a GP when this op 10 months later has made things worse. How do I make a bit of fuss guys as the once happy little thing in my life may be hanging herself from a light shade soon....? Link to comment Share on other sites More sharing options...
Guest Posted January 12, 2011 Share Posted January 12, 2011 A very sad posting - you both have my sympathy. Difficult to know what to advise but personally, I would write to her GP (Mark it URGENT and hand deliver it) and explain that you are both extremely worried at the course of events and at a situation where there appears to be no intention of any concrete action being taken. The practice seem to have failed to even give detailed explanations of what they think and about their expectations of the treatment together with their thoughts on future alternative treatments if the response to the present treatment is not encouraging. Make it clear that the worries are having an effect on your health too and that you are no longer prepared to continue in this way and, if necessary, you will write to The Local Area Health Authority, to your Member of Parliament and also, to the Health Minister himself. When faced with confusing symptoms, doctors often put the situation down to psychological causes but, even so, any kind of disorder needs treatment and they should specify some kind of diagnosis and a treatment plan. I would be very surprised if this didn't spur them into swift action. My best wishes to both of you. Link to comment Share on other sites More sharing options...
MadnBad Posted January 12, 2011 Share Posted January 12, 2011 I am very sorry to hear of your girlfriends problem it really does sound awful and serious, i would ask to be referred to another doctor or specialist if i were in her shoes and i would do it pronto things rarely get better the longer they are left. I really can't stress how important it is to be firm and not accept being fobbed off my family have been through various issues with doctors who really are just blase and seem not to care and these issues were solved by not taking no for an answer and not allowing ourselves to be shuffled back and forth. Link to comment Share on other sites More sharing options...
medusa Posted January 12, 2011 Share Posted January 12, 2011 Boy do you and your GF have my sympathies on this one! I can tell you 2 things for certain about my endometriosis: 1) I'd rather have my cancer back than the endometriosis, and 2) The hysterectomy hurt far less (and for only a couple of days) than the endometriosis did for half of every month. Endometriosis is incredibly painful, so painful that it convinced me that I must have been making it up, must have been imagining how bad it was, that anybody else would have just got up and lived their life around it all, but actually no, it really is that bad and all of the experiences like the hysterectomy that followed it turned out to be a walk in the park compared to it. Living in constant pain takes its toll on your body and mind too. I genuinely felt that I was losing my grip on the world when I was in that level of pain and there really was nothing that made it any better. Health wise, living in constant pain does compromise all sorts of body systems, from your sympathetic nervous system (fight or flight) to your immune system because of all of the stress hormones whizzing about. I couldn't take any hormonal stuff to try to help, but they put me on a whole raft of painkillers and a pill to reduce the amount I bled, then on really bad days I also used 2 hot water bottles (one front, one back) and 2 TENS machines (one front, one back) but still, when I tried to get out of bed it would make me faint so lying in bed in a shivering, crying, panting heap was my only option. I'd love to say that there is an easy way to treat this, but I know of only one. I couldn't wait to have my hysterectomy and I can only say that it changed my life. It was genuinely one of the most productive things I've ever done in my adult life, in terms of changing my quality of life. I know that the decision is not so easy for women who are much younger than I was or who have the chance of having children yet (I was 32 and childless but couldn't have babies for other reasons I already knew about) but I do think that your GF should push her doctor for a referral back to a decent gynaecologist to have this explored further. It's possible that the endometrial plaques have grown back very quickly since being cleared (I know at least a couple of women for whom this happened within 3 months of a laparascopic clearance) or there could be significant adhesions sticking the organs together in a way that they just shouldn't be stuck. Neither of these are going to sort themselves out. Neither is her mental or physical health going to improve unless the thing causing her stress hormone levels to rocket are addressed. Get her back to see a consultant and express all of this. Getting to the end of your tether is a really important sign, so please don't let this pass without at least presenting all of the information to someone who could potentially do something about it. If it's any help, Mr M E L Paterson was really helpful, decisive, efficient and supportive to me and I couldn't recommend him and his knife and needlework skills any more highly. Link to comment Share on other sites More sharing options...
*_ash_* Posted January 12, 2011 Share Posted January 12, 2011 One of my work colleagues spent nigh on 2 years in hospital because they wouldn't/ or couldn't conclusively diagnosed this. It must be hard to diagnose? I don't know. Her story with all the details had me cringing with guilt at my own good health, and sorrow for her terrible pain and experience. She eventually went private, and had the lot out (not meaning to sound blunt, but that's what she said). She's been pretty much fine ever since, to my knowledge. Losing the ability to have kids would obviously be a huge issue. Particularly if she's in her 20s. If the doctor is being blase about this, can you not get more opinions on the NHS, before considering anything else? Link to comment Share on other sites More sharing options...
bizzle Posted January 12, 2011 Share Posted January 12, 2011 One of my work colleagues spent nigh on 2 years in hospital because they wouldn't/ or couldn't conclusively diagnosed this. It must be hard to diagnose? I don't know. Her story with all the details had me cringing with guilt at my own good health, and sorrow for her terrible pain and experience. She eventually went private, and had the lot out (not meaning to sound blunt, but that's what she said). She's been pretty much fine ever since, to my knowledge.Losing the ability to have kids would obviously be a huge issue. Particularly if she's in her 20s. If the doctor is being blase about this, can you not get more opinions on the NHS, before considering anything else? Morning Ash Having dealt with a few women who have/had this condition at the Surgery I used too work at. They too felt exactly the same after they had their hysterectomy's. There was a new change in them from the person that I had treated to previously & the times before that . Link to comment Share on other sites More sharing options...
MAC33 Posted January 12, 2011 Share Posted January 12, 2011 my sister has endometriosis,real bad too. she swears by cutting out dairy, especially milk. Link to comment Share on other sites More sharing options...
HeadingNorth Posted January 12, 2011 Share Posted January 12, 2011 Three women in my family have had endometriosis; all three had to have a hysterectomy in order to cure it. It's logical that the doctor would want to try less drastic and permanent methods to control or cure the disease first, but it sounds to me like such methods have been tried and have failed. Link to comment Share on other sites More sharing options...
bethwebb Posted January 12, 2011 Share Posted January 12, 2011 I'm going through the diagnosis stage at this point.. Reading stuff like this is helpful, but I'm bloody frightened now! I hope everything works out for the OP, and would love to hear about any developments that come her way. I know how exhausting it is trying to deal with the pain whilst living a normal(ish) life. My OH has just left me, I think it was too much for him (he always thought I was a hypochondriac), so big kudos for sticking with the woman you love through what must be a horrible time for you both. Stay strong. My mantra: Chin up, tits out! Link to comment Share on other sites More sharing options...
bethwebb Posted January 12, 2011 Share Posted January 12, 2011 Just back from the Doc, apparently I'm having a laproscopy. Hope it doesn't make it worse like it did for the OP's OH. I'd love to hear some other people's experiences, anyone who's willing is welcome to PM me. x Link to comment Share on other sites More sharing options...
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