memory loss prostap hell

[Cheesychips]

my life is a living hell at the min

I have been on prostap injections now for 2 1/2 years. I was meant to be having a hysterectomy but because I have a complex medical history. They keep finding excuses not to do the surgery such as can’t have general anaesthetic because of XY and Z

and I can’t have pain relief because of XY and Z. They have an answer for everything I have currently been referred to another department. Apparently I need an angiogram before they will consider doing a hysterectomy under general. ( had brain surgery when younger)

it is apparently very inconvenient of me to have a complicated medical history and then develop endometriosis. It makes life very difficult for these poor poor Doctors.

I am being very much fobbed off

all of this, whilst feeling like I have dementia because I am forgetting everything I can’t process information normally it is horrendous

I am spending most of my days in bed asleep because I’m so tired

Also not allowed HRT

I am like in a living hell at the moment

I am blessed to have two beautiful children who were both young and it is hard work, looking after them in the state

Please, I need tips of how to get more energy how to stop being so forgetful how to just function a game like human being please

cheers

[DarkStar85]

Sorry you're having such an awful time. Is the prostap causing all this? If so I'd be off it like a shot. Were you feeling better before you went on it? Surely there must be other meds to try. No real advice re the fatigue as I suffer badly and I have 3 young kids to run after. Its so hard and I always feel guilty. You're not alone. Hope you get some better answers soon.

[Cheesychips in reply to DarkStar85]

yes, I think it is the injections causing it. I had this last injection a week earlier than I was supposed to so I wonder if that has caused like a homeowner overdose maybe

I know what you mean about feeling guilty

[Rainbow2468 in reply to Cheesychips]

I was told you should not have it early and that it has the be every twenty eight days, I'm so sorry you're going through so much, sending you a big hug too x

[Cheesychips in reply to Rainbow2468]

thank you so much. Maybe that’s what it is because I had an early it is like an overdose of the hormones

hopefully it will start settling down soon and I will feel more normal-ish

thank you so much for replying

[Rainbow2468 in reply to Cheesychips]

Hi your most welcome, I do hope you feel better soon, and get better appointments too. Have a lovely evening xx

[PinkStorm801]

I was on Prostap for 6 months and that was too long - the brain fog is horrendous so I feel your pain. Have they ever discussed using a different injection to help treat your endometriosis? Since being diagnosed with endo 10 years ago I have been on 3 different kinds of chemical menopause and the Prostap was the worst. Also, have you considered speaking to a consultant privately so you can discuss options?

There is a tendency with the NHS to not do surgeries because it costs them too much. A second opinion might help?

[Cheesychips in reply to PinkStorm801]

yes but the trouble with me is because I’ve got a complicated medical history. I need to have my operation at hospital which has an intensive care unit in case something goes wrong.

so I am forever in limbo, been passed from pillar to post

[PinkStorm801 in reply to Cheesychips]

When was the last time you saw your consultant regarding your endometriosis? If the Prostap is making your quality of life worse you need to discuss this with them and hassle them to help find you an alternative?

The one thing I can take away from my experience dealing with the hospital and doctors and pass on is to not let them forget you and hassle them.

I wasn’t suggesting having your operation private but to get a second opinion on the complexity of your history. It’s hard to rule out that the NHS are faffing about and fobbing you off saying it’s difficult when it could just be that they can’t be arsed. Like you said, how dare you have a complex situation where they have to work harder.

Just for context, I’m having to pay £250 to see my NHS consultant to get an answer about my treatment because they cancelled my appointment in December and the earliest they can give me is April. I booked with a private clinic yesterday to see him next Wednesday. The system doesn’t care, so hassle, hassle, hassle. Hope you get sorted because no one should have to live through this x

[Cheesychips in reply to PinkStorm801]

I saw my consultant my sweet I told her her former quality of life was with it. She just said there is no other options, except these injections are going back to how I was before. I feel very neglected

[Sunset-lady]

Hi, prostrap has put you into chemical menopause (as you know) and the symptoms are those of peri menopause. HRT, even a low level Tibolone, would help enormously - is there a specific reason you can't have it? It's a completely different experience with HRT. Good luck x

[Cheesychips in reply to Sunset-lady]

i tried the tibolone but a side effect is blurred vision and i am already partially sighted I panicked because it made my vision worse

[Cheesychips in reply to Sunset-lady]

yes, I have epilepsy so just need to be careful

[Sunset-lady]

You will need something stronger than Tibolone I think. It could be a lack of estrogen that's affecting your eyes - I don't know. I hope you get sorted. Tibolone isn't really HRT.

[Cheesychips in reply to Sunset-lady]

thank you no one is listening to me they are just leaving me like this but thank you for listening xx

[Lindle in reply to Sunset-lady]

Tibolone activates the oestrogen, progesterone (and androgen) receptors so acts the same as HRT. It’s a very complex medication and is actually banned in the US so it’s effects shouldn’t be under estimated.

[Cheesychips in reply to Lindle]

oh i only tried it once it effected my vision so badly i panicked

Why is it banned in US how scary

[Sunset-lady in reply to Lindle]

Doesn't it use the estrogen you already have rather than make or provide you with any? This is why it doesn't work for older women?

[Lindle in reply to Sunset-lady]

Tibolone is only for use in menopausal women. The reason it shouldn’t be used after 60 is due to stroke risk. It doesn’t matter where oestrogen comes from - whether already in our body or from HRT. In order to have any effect in cells it has to bind with and activate the oestrogen receptors on the cells. Tibolone is a synthetic steroid (as opposed to oestradiol being the natural one) and activates the receptors just the same. So the same effect is achieved within the cells.

[Sunset-lady]

I think I read on the NHS website that Tibolone us so very low in estrogen that it has no effect on some women.