Depressed: Sorry for this all but I... - Endometriosis UK

Endometriosis UK

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Depressed

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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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jvg69 profile image
jvg69

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

Arcadia-77 profile image
Arcadia-77

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. bsge.org.uk/ec-BSGE-accredi...

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 scope.org.uk/support/disabl... or the citrizens advice.

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

Mabes profile image
Mabes

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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