Losing My Mind

Hi, I was diagnosed about 6 months ago and due to my age they wont do anything about it (i'm 37). I really what to know what the mental side effects are, i'm extremely tired most of the time and really struggle to concentrate, i'm finding my job really tough to carry out and I;m beginning to think I'm losing my mind. I forget simple things and my mind wanders constantly, I've only felt like this since my initial symptoms started. Can anyone offer advice ?

14 Replies

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  • H there have you had a lap it's the only one hundred percent diagnosis, its ridiculous for them to say they won't do anything because of your age , what is their reasoning exactly, firstly I would definatley switch docs/gp , and I would also keep persisting , it seems to be the only way anything actually gets done when it comes to endo x

  • Yep had my Lap last year and it was confirmed. They wont give me medication because I suffer with migraines, they haven't really explained much about the illness or possible treatments and support

  • The mirena coil and Endo diets have been really helpful for some women, don't know if you have tried either x

  • This is actually age discrimination. They can't refuse you. The laws around this are changing and getting stricter.

  • Can I ask what your age has to do with it 37 is no age at all I had first diagnostic surgery at 40 who have you seen ?

  • Hi Hun. I was 36 when I had a full hysterectomy so they can't refuse you treatment because of your age. You really need to push your GP. Good luck. X

  • Hi, I'm 39 and just been diagnosed with endo which was excised from my uterus and ligament and adenomyosis, I've got my follow up appointment on the 14 April, but he said after surgery a hysterectomy may be required, who have you seen so far???

  • thanks for the answers I've seen specialists at my local hospital, who seem really very reluctant to even mention hysterectomy to me. My cousin has the same condition and she had to battle with her doctors to go ahead with a hysterectomy (she's a year younger than me and has private healthcare). Presently I can deal with the pain most days its the extreme tiredness and lack of concentration, and emotional side I'm really struggling with. My work are aware I have the condition but because I look ok they don't seem to understand the full affects.

  • A hysterectomy is no guarantee that endo will not return. It is not a cure. Removing the uterus is only advisable if it is diseased in some way, you get recurring troublesome fibroids or you have adenomyosis (endo within the uterine wall)

    I suggest you go to your GP and get referred to an endo specialist. Find one here bsge.org.uk/ec-BSGE-accredi... and tell your GP which one you want to be referred to. You have the right to choose who you see on the nhs. I am assuming that you have not seen an endo specialist. If you have then get a second opinion.

  • Hi Sweety

    I think it's awful you have been given this treatment. I think we can all relate to you with regards to concentration and finding work really difficult. Endo not only affects you physically it affects you mentally. You will have good days and bad days. Have a read of my previous post

    healthunlocked.com/endometr...

    I went through a awful struggle mentally last year due to a so called specialist telling me there was no cure and no operation would help. Basically said I needed to manage it medically with the coil. I tried and it failed leaving me with terrible depression, and horrible side affects. I too suffer from migraines, they last 3 days and knock me for 6 but the medics are not interested in this and don't take me seriously.

    I cut out loads of things from my diet, cut my hours at work, took up exercise and went to counselling. It's helping but I still have bad days, I still get tired. I've learned not to be so tough on myself, learned that I'm not perfect, learned that I'm not as strong physically and mentally like I used to be. It's difficult but you have to be realistic.

    Btw I'm 38, symptoms first appeared in 2009 and I had a lap/diagnosis & laser treatment in 2011. (sorry can you do the maths, I cant get my head round it).

    Look after yourself and don't beat yourself up.

    Take care x

  • Feck sake! I was diagnosed and first treated when I was 32!!! They wanted to preserve my reproductive organs as best they could at that age just because I was still very much in my childbearing years, even though I insisted I wasn't worried about having children. But to refuse you treatment of any kind is (excuse my language) fucking inhumane. It's actually entirely inhumane.

    You push, and don't stop pushing. You will feel the mental strain, but once you push long and hard enough you start getting on a path to treatment, you will start to feel more sane and more restful in your mental space.

    Stay strong, and lean on us here because there's a load of information here that's so useful and supportive. You're so not alone. xx

  • Hi Sweety, you need to tell them you want something sorting. I m 40 and suffer from migraines very badly and have to take anti epilepsy meds to combat them (even tho not epileptic) however I was offered and am on Zoladex for 6 months to calm everything down. Only 2nd month but feel that something is better than nothing.

    Keep your chin up Hun x

  • Hi been to the Doctors this morning and i'm extremely anaemic. I've been given a two month course of iron tablets and told that i'd be best with a mirena coil. I've heard mixed reviews on this and now i'm not sure what to do. My Doctors suggested that I've I don't i'd be making myself very unwell.

  • When you say they won't do anything what do you mean exactly? If the doctors are unable to help, ask for a referral to another specialist (depending on where you are, and how far you can travel, there are specialists all over the UK). PM me if you want more information - I've been dealing with this for two decades, I'm 42.

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