Prostap Hell: Hi I recently chose to have... - Endometriosis UK

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Prostap Hell

Sunflower1968
Sunflower1968
7 Replies

Hi I recently chose to have the prostap injection after years of living with endo and a failed operation to try and resolve my pain.

I read many articles about prostap both negative and positive and thought hopefully my experience will be positive.

I have the hrt Livial which I’m sure is keeping the hot flushes at bay.

Firstly I was not given any literature about the injection and I have since thought how easy it was for me to access it.

Since having the injection I have felt like a huge Black could is over me I can’t stop crying I have been in bed for 5 days feeling like I have been hit by a truck.

I am usually such a positive upbeat person but I seriously feel suicidal and want this feeling to change. All of my joints hurt and my vision is blurry.

I can’t sleep and keep having palpitations up to 130 bpm.

I have spoken with medical professionals and was advised that it should pass and maybe even settle after the next injection in 4 weeks time.

Seriously another injection? The nurse advised me the chemicals normally peak after about 2 weeks so the worse is yet to come!

I was advised by my gynea that I’m riddled with endo and a hysterectomy could be very tricky as “it’s a mess in there” get words.

I feel powerless and frustrated and lonely 😔

So I logged on here and thought maybe somebody has a happy ending for my story??

Thank you xx

7 Replies
oldestnewest

Hello Sunflower

Sorry to hear of this horrendous trauma you are living through.

I have no effect experience of any of this to share - but have been left shocked and traumatised by medical professionals and comments made.

Is there any GP in your practice you could talk to? Or anyone on a helpline?

Is there any action you can take to investigate if this treatment could be negated with an antidote?

Sorry I've no experience - hope someone who can help comes on here soon.

God Bless

xXx

You are not alone

Love Mary x

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Sunflower1968

Thank you so much Mary for your reply and king words. I sought medical help and we basically advised it’s just side effects. The thing is Mary I have tried everything from a coil to multiple pills abs so many variations of pain killers. I have a beautiful 17 year old daughter who took one look at me yesterday and said “please mum do not have this injection again” I assured her not a chance

Tears have been rolling down my face and yet I’m usually the upbeat happy go lucky lady who friends turn too.

I have prayed so hard to all of the gods above to ease our Endometriosis hell I can’t believe so many people are suffering with this awful disease.

Take care

Love

Samantha x

1 like
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weekari

Oh you poor thing. I'm sorry sorry you're going through this. It sounds absolutely awful. Just know that 1. You are not alone and 2. This feeling you have is temporary, it will pass once these chemicals are put off your body. It's not you, it's the drugs.

I was offered zoladex treatment a few weeks ago. Like you, I was told nothing about the possible side effects or risks. I was just repeatedly told that it was a 'tiny injection'. As if it was barely even a treatment at all and they're was nothing to be concerned about. I had resigned myself to trying it but my instincts were telling me otherwise. I did some research and came to the conclusion that I didn't want to do it, I wanted to try some alternative methods first. I feel that my issues are due to a hormone imbalance and I want to try resolve that. I've been looking into alternative options and I thought this might give you a bit of hope because it sounds like you might be feeling a bit hopeless?

Have you heard of estrogen dominance? It can cause a lot of of symptoms, including making endo grow and fibroids. Usually when we go to the doctors with symptoms of oestrogen dominance, they give us synthetic hormones. However, over time this can add to the hormone imbalance and cause further issues. An alternative approach is to try and balance the oestrogen dominance through the use of bio identical progesterone cream. This cream does not disrupt any other hormones in the body and it can be completely absorbed by the body as it is bio identical. It is not thought to cause any other side effects. I will be starting this cream on Wednesday and I hope so much that it will reduce some of my awful symptoms. I have heard some wonderful things about people using this cream. If you want to find out more, I suggest reading Dr John Lee's books on what the doctors don't tell you about menopause or perimenopause. There are also a couple of books on healing endometriosis naturally, I have read the Wendy Laidlaw one and it details everything quite clearly.

As well as using the cream, there is a lot of evidence that diet can help, this would be a gluten-free, soy free, sugar-free, alcohol-free diet as well as reducing the use of chemicals in your cleaning and beauty products.

Cortisol (the stress hormone) can also lead to oestrogen dominance, I believe that it is also very important to manage stress levels. For some this can be just some simple changes to the day-to-day practices (doing a bit less, meditating, yoga, maybe a change of job etc) but for others, me included, this means doing a lot of work on healing trauma and loss. I believe this is getting to the root of what is actually causing my oestrogen dominance in the first place and if I do this along with the diet changes lifestyle changes and using the progesterone cream, I really hope that I get to what is underlying of my issues of endometriosis and fibroids, without needing medicines with side effects.

The doctors have described my insides as being "chaotic" and "bizarre" , which has not been a very nice to be described, especially when it comes with no ideas and how to resolve this other than a full hysterectomy.

Please keep letting us know how you're getting on.

Xx

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Sunflower1968

Thank you so much for your kind words and very informative reply.

I practise mediation daily and as a nutritionist I follow a very healthy diet. I have always tried to follow a holistic approach to my health and I was literally screaming inside when I had the injection, I too know my issue is a hormone imbalance and after over a decade of endo hell I was ready to try anything.

I’m so grateful you did not have the injection and are looking into alternatives.

Because the NHS offers such basic hormonal testing (funding) it is hard to identify which hormones are imbalanced for instance testosterone is often overlooked but can play a major role in lots of symptoms.

I know I shall be ok once this poison has passed through my body and I shall always listen to my gut next time.

Please keep me posted on your journey I am very interested and truly hope you have a wonderful outcome. Xx

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weekari

With your background and lifestyle, I can understand even more how much this must've been a battle for you to decide to take this- and I think that just shows how desperate you are to find something that helps. This must add to how hard it for you to deal with these symptoms. I hope this doesn't sound insensitive but what you're experiencing was exactly what I was worried about would happen to me. Of course, I may have been fine and it may have helped but it's just such a risk to try something that's in our systems for so long. I don't think it's right that we're not warned about this fully.

I have been so split in my thinking about the treatment. I thought I may be being unwise following my gut and not taking the treatment advised but I tried to research as much as possible. I come from a clinical background having done a doctorate in clinical psychology and worked in the NHS in clinical practice for over 10 years but I'm aware I'm also not a medic. But I've realised it's impossible to come to a completely fully informed conclusion about it all as even the most specialised drs don't fully understand how our hormones work and what causes endo etc. I do find it quite concerning how quickly they make changes to our hormones without ever testing anything. I have been quite overwhelmed trying to come to even a basic understanding of our hormones - it's so complicated and such a balancing act, that is constantly changing, over the day, throughout the month and over our lives! I've paid for my own hormone testing to try get a bit of an overview of what I'm functioning at- even just as a baseline before I start to try make changes. The way I've reconciled it is that adding in a little measured amount of bio identical progesterone is likely less disruptive than completely shutting down an aspect of my hormone functioning. I'm going to continue to measure my hormones while I start using the cream. I am pretty scared about it though which is why I consulted with a naturopath who specialises in female hormones. She was pretty well informed and seemed to have lots of positive stories.

I'll definitely be posting here on how I get on with the cream.

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Sunflower1968

Hi

I couldn’t agree more!

I’ve had two failed endo surgeries and years of a hormonal rollercoaster.

I plan to visit professor studd next year as I have read very promising articles about his work.

I have seen a gynaecologist privately and was informed I needed a hysterectomy as my Endometriosis is stage four but the procedure would be risky because of the endo being so embedded.

I have clients who have had a hysterectomy and are very healthy and happy and now only needing progesterone gel/cream.

I also have a very close friend who too is living with hellish hormones which are effecting all of her relationships. She has had a coil fitted and using hrt patches but is still struggling.

May I ask did you contact a specialist Center for hormonal testing?

I’ve decided I’m going to take my daughter on holiday during half term and stay positive and focus on the future and find lots of fun things to look forward too!

Onwards and upwards!

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weekari

I paid privately for the testing. I did it through Verisana labs. I get my results in the next few days. I've only paid for progesterone and estrogen but now I wish I'd got cortisol too. It was quite a bit more expensive though.

It really sounds like you've been through it. I've really struggled with my health the last 4 years but didn't have any diagnosis until a few months ago (it was implied it was all stress related). Now I've been a hysterectomy would be the only cure but it would be risky too. I'm reading an amazing book called 'ask me about my uterus' I recommend it for your holiday reading! It's really helping to give me a different perspective on it all.

It's great you've got something positive to look forward to with your daughter

X

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