Prostap failing possibility??

[Beki2244]

Hi.. so I have a strange one.. has anyone had the prostap successfully where it does its job no pain moods subside side-effects are well and truly kicked in hot flushes left right and centre.. for the first month.. then notice on the second month pain starts to come back moods starts to come back and getting a period too, iv also noticed iv had no hot flushes.. i spoke to my consultant when I first got the pain back and he said an MRI scan might be needed but now the hot flushes have stopped and I got a period I’m wondering if the injection has stopped working is this possible? Has anyone else had this happen to them? Xx

[Hidden]

Hi, I’ve had them for 6 months. It did stop my periods initially, but then got some light bleeding (also have Mirena). Pain also initially stopped, but then back as bad as ever. Saw consultant in Feb and agreed that did not work for me, so now on waiting list for surgery.

Nurses administering injections were split between some women respond really well and they didn’t really work!

I hope this helps.

[Beki2244 in reply to Hidden]

This did help thank you very much.. I feel like this Journey have a pain-free stressfree life dealing with this diagnosis is so unknown and it’s such a big black hole.. The relief you feel when someone says I have this injection you can take it will take everything away for a short time six months it’s just to give you a six month break and then to find it doesn’t work for you 🙈 lol if I don’t laugh I honestly will cry lol.. For you is your surgery to remove endometriosis I hope you don’t mind me asking x

[Hidden in reply to Beki2244]

I read on here another way of looking at it. The injection is giving your body a break for 6 months. So even though there is not really a let up in the pain / periods, there are likely to be other benefits internally. Try and persevere if your GP / consultant think it beneficial. X

[Hidden in reply to Beki2244]

I’m waiting for a total hysterectomy. I’m 41 with no plans for children. The consultant agreed this was the best approach for me. I didn’t mention this initially as I didn’t want you think this was the only option if prostap does not work for you.

[Beki2244 in reply to Hidden]

That is true it has to be doing something even if I don’t feel the full benefits.. oh no hun please don’t worry about saying about a hysterectomy I’m fully aware of the possible endgame it’s a regular conversation in my house lol as I’m 30 and I do have a child but my partner doesn’t so we talk about it a lot as I feel some sort of pressure even when it’s not presented by him bless him.. I wish you lots of luck with your surgery as I have heard so many ladies in this position say it’s the best thing they ever did! Xx

[Robins53]

Hello, I personally found no benefit whatsoever of taking Prostap - it made me feel much worse. I was given it for 3 months from the day after I had surgery to remove a large endometrioma cyst on my right ovary and drain cyst on left ovary. I was told it would prevent cysts returning and understand it ‘shuts off’ functions of the ovaries. For me this was in part to prevent reoccurring pain and cysts and also prepare me for a cycle of IVF.

As I was been scanned regularly we saw my cysts returned straight away. I did have less pain but this is likely because my very large cyst has been removed. So Prostap didn’t give me any relief or stop endometriosis from growing back.

I had Prostap at the start of 2019 and have since done a lot of research into endometriosis and Prostap and Prostap is not a treatment for endometriosis - the only treatment is excision surgery. Prostap may temporarily relieve symptoms for some. It should also be given with Hormone replacement therapy (HRT) to ease the horrendous side effects and stop long term damage that can be caused by taking it.

If you research on ‘Nancy’s Nook’ Facebook group they talk a lot about it - as a US group but a lot UK members they call the drug Lupron - if you research Lupron : Prostap there is some quite worrying information out there so I wouldn’t take it again personally.

If you are not already, I’d advise getting under care of NHS BSGE centre from a referral for your GP. These are qualified consultants who know how to manage and treat endometriosis.

If you are looking for pain relief I found taking supplements and following a endometriosis friendly diet (anti inflammatory) had a positive impact but it does mean cutting out a lot of fun food and drinks!

Not sure if this helps at all!

[Beki2244 in reply to Robins53]

Wow this is such an eye opener! The truth is I haven’t even been diagnosed with endo my consultant is ‘guessing’ as we are in Covid and he said he doesn’t want to risk his staff or myself ( I’m paying private ) which I cab understand what he’s saying but I’m also slightly annoyed because iv gone private because I physically cannot take this pain any longer it takes over I dread certain times of the month as I know this pain is coming and it makes everybody around me miserable so I wanted to get this sorted the fastest way possible.. I looked so much into prostap before having it but I was more scared about the side effects than the long term damage.. I will be looking up everything you have told me and I cannot thank you enough for this information it’s much appreciated. X

[Robins53 in reply to Beki2244]

Glad I can be helpful; it’s such a minefield with this disease! Unfortunately it’s my understanding that there are very few experts to deal with endometriosis even private consultants will not necessarily be specialist enough. Most only receive general GYNE training. Hence Nancy’s Nook provide list of experts and BSGE centres are expert led too.

It took me 18 months to be referred to BSGE by my GP! This is even after I had initial surgery. But I did manage to have MRI with NHS last year which confirmed stage 4 endo and deep infiltrating endo. So I’m on a waiting list to have this removed in excision surgery. As you say COVID is making things extra difficult. You should at least be offered pelvic scan by NHS I’ve had them throughout this last year despite the pandemic.

Good luck getting your answers and some pain relief. X

[Hailsmitch]

Hi there

I’m going for my 3 rd prostap injection today. I had a diagnostic lap and excision a year ago but my endo pain did not go and just got worse.

After declining prostap treatment for many years I finally decided to accept it as I’m so desperate to not have this pain anymore.

I’ve surprisingly been okay on the injections and HRT however my pain has not reduced.

My periods are gone but my periods were never the problem really. It’s the daily pelvic pain and cramps that is ruining my quality of life.

I feel so deflated but I’ve decided that I HAVE to believe that this 3 rd injection WILL give me relief.

I am 40 next month, no desire to have children so I am open to a hysterectomy however, I know this is not a cure. I don’t want to go through all that and find that this bastard disease grows back in a different area of my body!

I somehow think I need to find a endometriosis specialist who only works on endo and knows these disease ancd continues to learn about it. I believe there are very few out there. And have another lap and excision to remove what my surgeon could not see.

I hate this disease. All the uncertainty and not knowing how to treat it.

I need to be positive as I’m about to go for my 3 rd injection now. I actually just want to scream.

Love to you all who suffer with this horrendous disease!

Xxxx

[Beki2244 in reply to Hailsmitch]

I couldn’t of put it better myself this is a bastard disease obviously I know there’s worse diseases out there but I’ve never known anything like it to hit myself... I was shocked when I realised that a hysterectomy does not take endometriosis away I was gearing myself up in my head to go through with a hysterectomy as I’m only 30 so it kind of is a big deal but after A lady on this platform telling me hysterectomy does not solve the problems again it’s another hit of disappointment that there is no belief from this... I honestly send you the same love back and hope that someday soon some little brainbox will come up with a miracle cure.. how can there be so many of us going through the same pain physically and mentally the same drain it blows my mind that we’re all in the same boat! Xx

[Hailsmitch in reply to Beki2244]

It blows my mind too! How can there not be more information on this how can this be such a struggle for so many?

I have Narcolepsy and depression and I finally got myself balanced and then the endo battered me.

I’m so confused as to how it all began in my body and why it feels worse after excision.

I went to my appointment today to have my 3 rd prostap and my Gynea and I looked at the photos from my lap as she seemed a little confused and concerned that I have had no pain relief.

My endo is in 3 places and is tiny .

Tiny speckles that they thought they removed. I told her I’m so shocked as I have a high pain threshold and don’t consider myself to be weak or dramatic when it comes to physical pain etc.

I feel like there is chaos inside my body and like I’m being poisoned to have period cramps every day of my life.

I’m not on the floor in pain. But I’m in pain every single day and rely on pain meds which must counteract my Narcolepsy meds. To see how tiny it is in my body is shocking.

She reminded me that some women have endo growing everywhere in their body but have no symptoms. And some have tiny bits and are in and out of A&E.

It’s such a crazy disease! Bastard disease indeed. ( I have other words I would like to use but I must respect this platform as I would hate to be kicked off for my foul language) lol

That’s how I feel- having a hysterectomy so young and then the potential of it coming back is terrifying. All that for nothing! I’m 39 so it’s so much worse for you in that regard.

I don’t know how often it returns after a hysterectomy and I’m sure it’s heavily rare. But what if it does grow back in another organ? I would lose my mind!

I’m so grateful that I never wanted children as that is a true blessing as I’m sure this bitch face disease causes so much pain with infertility.

And some woman have endo , have children and their endo is gone. Isn’t that insane? But I’ve heard it multiple times.

That is not the route I wish to try though lol.

I don’t know if I have another lap with a different surgeon or to consider a hysterectomy next. It’s exhausting! My mind swings from one type of treatment to another.

Constant battle in my head.

Then I doubt myself and go through all that rubbish of “ am I really in pain?”

“Maybe I need accept this and try move on with life and know I will be in pain until the day I die.”

“I am lucky I can still work and rake painkillers other women can’t, stop fighting this and accept it”

But just because I’m not in hospital from pain or lying on the floor with pain does not mean that my life is not heavily impacted by it. My quality of life is crap. My worries about taking too many painkillers is a constant battle in my head.

Then all the hormones and PMS and monumental weight gain for me.

It all just sucks and I want to believe there is an end in sight and not when I’m 75 years old.

Argh FML!

Lol

Hugs and positive thoughts xx

[Beki2244 in reply to Hailsmitch]

I think you’ve just put down in words everything I think and feel because on top of this I also have something to PMDD which is horrific in its own right and struggles to deal with.. I think us as women have to deal with an awful lot! My consultant also told me that some women can have a huge mass of endometriosis and have no pain yet other women can have tiny bits of endometriosis and be in crippling pain daily.. I feel quite lucky that I know exactly the dates that I’m going to be in pain as it’s kind of set in stone that I get horrific pain with it on ovulation and for two days while I’m on my period.. where is you’ve just said that you’ve got it daily and I’m so so Sorry that you have to deal with that... well yeah people have extra stress with the ability to carry children with this! I have a son and before I had him I had no issues other than horrific periods but I’ve never got this particular pain and when it got suggested that I had endometriosis family member who had endometriosis said it can’t be this because you’ve had a child.. which still sits in my mind daily that is this endometriosis because of that fact... I also like you worry about the painkiller side whenever I take painkillers now I get actual where your stomach would be pain like an irritation and I’m starting to feel like pain killers are causing a different issue by irritating that stomach lining the list is never ending is it I think it comes hand-in-hand with depression because of how bad you feel about the pain and how you know it’s coming and how there is no answer at the end of it.. I think it gets in the way of relationships between family members and partners because you are constantly in a bad mood because you’re depressed because you’re in pain.. then your ability to do day-to-day things and leave the house and do your shopping there was once I was sat outside the shop in my car for an hour because I was scared to walk or scared to be in so much pain in front of strangers and cry.. we will all 100% get through this though we have to do there is no other way around it we will find our path to make things work xx

[Hailsmitch in reply to Beki2244]

I know it’s so hard.How did you get a diagnosis of PMDD? As I have been looking into this over the past year or so and I sometimes think I have this but not sure.

Maybe just INTENSE PMS but PMS did not lessen when my period came.

I seemed to be in a state of PMS for most of the month.

Some people get relief from endo after having a baby. Not all. That’s not a fact. Just some people who have children seem to be clear of endo after birth but some say it returns after years. It’s just such an all over the place disease that makes us feel like we are losing our minds.

I don’t seem to have any negative side effects from all the painkillers ( cocodomol &paracetamol) except my insides probably look battered from pills.

My relationships ALL take strain from my endo my pms my depression my narcolepsy.

I’m a mess. I have finally found a wonderful man who is good and kind and mature. But I just do not have the capacity to be a good girlfriend.

We have been together for 3 years and I’m just waiting to feel like my old old self again and want to and be able to do more in my life. But I just can’t.

I can get through work and that’s it really.

I am moody, I’ve completely lost my libido due to my anti depressants. I used to be such a warm

Cuddly person and now I’m not very affectionate anymore. 😭

I can’t go off these anti depressants as it took me sooo long to find something to help me.

My boyfriend never puts pressure on me which makes me feel even more guilty.

The aim would be for us to move in together. I’m nearly 40 and he is in his 50’s and he would love for us to live together . He knows fall my problems so expects VERY little from me.

But I know he deserves more and I want to give him more but I truly feel I just can’t.

I cannot see myself living with about human being again as I finally live alone and I love it.

I feel safe and my house is my sanctuary. I know that living alone no one has to be affected by my mood swings and I’ve become very set in my ways. When living with people I find it sooooo stressful as I need to try hold back on being a moody cow or a depressed cow.

Living alone I feel very free and can just BE.

I’ve gone from a very out going bubbly person to an introvert. I hate socialising and going out . I just want to be at home or out in nature. My whole personality changed when I gave up alcohol.

( I had to give up alcohol as it made my mental health far worse even if I only had a drink or 2)

I’m very sad atm as I think I need to be realistic and break up with my boyfriend and then just carry on focussing on my health and surviving each day. ( of course one day I may feel great again and he will be gone)

I have had so many relationships in my life and I learnt to love being single so I am lucky that I love solitude.

I just don’t see any point in considering moving in with my boyfriend if I cannot even have sex due to lack of libido , pain and mood swings.

It’s definitely not him as he is the first man I am sexually compatible with .

I feel like I’ve become A- sexual lol.

Yikes sorry I just went waaaay off track.

I had my 3 rd injection and touch wood I think I’m feeling slightly less pain. Not that I believe these injections are the answer.

I’m on Instagram to follow the endometriosis and narcolepsy communities and have learnt soooo much but it’s scary as nothing seems to really be helping anyone.

I’m being rather negative. I don’t mean to be .

I never dreamed that this would be my life and I would feel

So ill so often . I feel like people must think I’m a hypochondriac as I’m all

consumed with all my crap. I never used to be. 😭