Prostap injection : Hey, my first post. I’m... - Endometriosis UK

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Prostap injection

AmyPeeps profile image
50 Replies

Hey, my first post. I’m sorry to read so many people are struggling with pain.

I had my first prostap injection just over a week ago and was wondering how long it takes to work. I’ve had some symptoms like head aches and woken the past 2 nights sweating, so something must be settling in. I’m due on in ten days and am having the same pain I usually get, if not worse. I’ve got my diagnostic lap on Wednesday, which can’t come soon enough. What are other peoples experiences with this please? I was hoping it would have given me some relief this month but had it on ovulation day so doesn’t look likely.

Many thanks in advance xxx

50 Replies
Moon_maiden profile image
Moon_maiden

Hi

I’m not the best example for the injection, Gynae told me it can take 2-3 months sometimes. I know this isn’t what you want to hear.

What pain meds has GP given you?

How do you feel about op? I was scared on the run up, but in the end very easy to get through. Phone, charger, book, a small overnight just in case you’re last down. Something loose fitting for the way home and give yourself time to heal. They will have moved organs to take a look around so there’s more going on than we think. Will they remove as well if they find it? Have you had any scans?

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

hey thanks for replying. I’m actually relieved it’s not meant to work straight away or I’d be worried about still being in pain if that makes sense 😊.

I’ve got a variety of pain meds thankfully. From diclophenic to codeine so I have different strengths for the severity in pain. How about you?

I was fine about it all, had a paranoid wobble earlier after my pre op about dying but thankfully short lived and feeling positive about it again now.

It’s great to hear that you got through yours well and thank you for the advise, I was wondering what to bring other than my huge pants I’ve still got after my second section lol.

Yeah the plan is to remove it if they find anything and they are also doing a hysterscopy too. I’ve had 2 scans both showed zero issues which I believe is common with endo but second showed a small cyst.

How are your symptoms after your lap? I hope you’re ok. X

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

Perfect sense 😂 I think it’s the nature of the condition 🤦‍♀️

Been through them all as well, hopefully about to try cannabis.

we know that’s one of the least likely outcomes, I was before the first one in 2020, three more since 😂 that includes Endo, hysterectomy, bowel adhesions and gallbladder though, got complicated.

Not your first op, 🙂, it’ll pass you by I’m sure. You’ll get there and wonder why you were worried. The only thing I hate is the lack of empathy from the ward staff, they just wanted people in and out.

That’s good they’ll remove, never sure why they don’t all the time.

If it was ultrasound, can show but only if they know what to look for, none of them are reliable.

Let us know how you get on 🙂 sure you’ll be ok

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

thanks lovely! I’ve got some CBD oil capsules. They help with my mood but haven’t noticed a difference with the pain, probs not taking enough of it. I’ve read it’s super good for endo.

I’m so sorry you’ve had all that pain! Are you having those ops or have you already had them?

Aww thank you, I’ll let you know what they find! X

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

The consultant was planning on giving CBD and THC oils to use independently. Good to know CBD has helped you with some. I know if I can get the pain under control the rest will be fine.

I’ve had ops, two in 2020 and two this year, bowel adhesions should’ve been done at hysterectomy. Gallstones were a surprise when an incision wasn’t healing from Feb. Turned out gallbladder and adhesions was chronic, been there a while. It all got more complicated because of a late diagnosis, I was 51 🤣

I would absolutely recommend getting Endo sorted asap, never let it linger.

Ask anything, slightly brain dead as didn’t sleep last night.

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

your consultant sounds fab and I’m really pleased you’re being well looked after.

Crikey, they doesn’t sound nice at all!! Hopefully some relief coming for you soon.

No sleep due to pain?!

X

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

I’m with an NHS pain consultant and an appointment next month to see about nerve block, last one wouldn’t. It’s a real eye opener when you have to dig your way through. 😂

last night was unfortunately, easier tonight thankfully.

Do you work?

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

oh wow so will they give you a hysterectomy ?

how’s your pain now? I hope you’re ok.

I go back to work on the 14th. New job. I was due to start beginning of the month but due to an increase in pain wasn’t able to. I was really upset about it but my new employer was amazing and have extended my start date. Do you work?

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

I had a hysterectomy in 2020. I was diagnosed very late and really wish I’d done something years ago. I haven’t worked for a while now.

That’s great they are understanding about your start date, gives you recovery time after op. What sort of work is it?

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

crikey I’m glad I’ve clicked but saying that it was only because I was sat in a&e next to someone with endo and got chatting. I don’t think I’d have considered it otherwise and researched it. Has the hysterectomy helped you?

Totally understandable with work. I work in the domestic abuse sector.

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

Hopefully these days it’s the first thing they consider, the publicity will help. So good you got chatting, pity it was A&E, she must have been in pain, possibly took her mind off it.

I considered it years ago but just got on. My aunt had a hysterectomy because of it and my mum wasn’t officially diagnosed but pretty sure from her symptoms and also hysterectomy. If it was I have it from both sides. The hysterectomy certainly took away some pain, I had enlarged uterus and numerous fibroids. Not sure whether it’s something else or nerve damage in the abdomen.

valuable work you’re doing, stressful at times as never cut and dried to deal with. You’ll find you’ll see it in other women where they’ve been told they have anxiety. Most of that will be hormonal imbalances. There’s me assuming women but men are at risk as well.

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

I really hope so as the lady I was speaking to just left as they weren’t helping her and they tried to send me home with period pain because they didn’t know what it was. I’ve had to push to get to where I am but have met some really helpful docs and nurses who have gone above and beyond. I’m lucky really.

Oh gosh they say it runs in the family. My mum had similar pains/ periods etc but she said not all the other stuff that I get as well. My cousin had a hysterectomy too which I believe was due to endo.

That’s horrendous that you’ve been through so much and haven’t got to the stage where you’re pain free 😢.

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

That was awful, there are things they can do if it’s bad, intravenous morphine is one of them. They choose not to, there are always options. That’s great you’ve had some help. It gives very bitter feelings having to push

it’s likely your mum had mild and sometimes having children does help. Drs aren’t wrong in saying those things just inappropriate. Looks like it’s in your family to a degree. My cousin probably has it but has been on the pill and controls it that way

I’m still fighting for answers, much to the annoyance of GP and gastro 🤣

are you doing anything nice over the weekend?

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

you must keep fighting lovely. It shouldn’t be a fight though. It’s a sadness in itself isn’t it.

I think if you can find one health care with a bit of knowledge and a bit of empathy then stick with for sure.

This weekend I’m prepping for op Tuesday. Mums here too which is nice she’s staying the week as hubby has to work, how about you?

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

We shouldn’t. I’m on the verge of complaining about gastro, see if there’s anything from him next week. The only way you get the right help is to pay these days. Other forums are the same with lack of empathy.

let me know how op goes, I’m sure you’ll be ok 🤞 for answers and total success. 🙂

Going to do some gardening in a bit, slightly rough night.

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

I’ve found complaining does get the ball rolling and I’d have had to have waited 60-70 weeks for my initial consultation if it wasn’t for my mum paying for one. Treatment is back with nhs.

Here now. I forgot how comfy hospital beds are lol

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

Do you know what time op is?

You won’t feel up to messages for a bit, but when you are let me know how you are.

It’s ridiculous amount of time to wait, worth paying at times.

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

they’ve said about 3ish I just want to get In there now so I can find out some answers

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

I thought the same, very natural when it’s not something that can be seen.

🤞

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

they found endo!!! They said not loads but not a small amount either. I would say about pain in my right side and weird bum symptoms. Guess where the endo was?!!! Right hand side and some near my bowel. Do you think they’ll offer a hysterectomy now they have a diagnosis?

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

How are you feeling today? Are you still in hospital?

That’s great you have answers and have come through op 😀

Not so great that it is Endo, we’re pretty good at knowing our bodies. It’s horrible that we continuously prove we’re right 😂

See how you go, 🤞 removing the Endo will hopefully sort the pain out and you’ll be ok. Id imagine they’ll say give it six months before making a judgement on a hysterectomy. I ended up desperate but wouldn’t have if I could’ve avoided it.

No lifting anything for a couple of weeks, you’re insides will be battered and bruised, did they excise or burn?

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

hey I’m home now and the pain isn’t nice but its hopefully the last lot. They’re keeping me on the prostap for 3 months then see how I go. My insides defo feel battered now the gas pain has subsided a little.

I got the hiccups when I got home. Ouch!!!! Not sure if they burnt or excised. Does excised mean cut?

They came and showed me the pics which was mind blowing! It looked like they’d cut one bit as there was a hole in it lol.

With the dressings. There’s tape and a waterproof dressing on the top. I changed a couple as they got wet in the shower but nurse said to leave them on for 3-4 days. Got the sexy stockings for clots and the injections for clots too.

I hope you’re ok?

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

That’s great, you seem very with it. I was a wreck. Forgot about gas, did you have peppermint tea after?

😬 😂 makes me wince thinking about hiccups

Excision is cutting, I think it’s electric and seals as well. Looked at videos on YouTube.

I love seeing pics, they don’t do video, least that’s what they told me. It does get fascinating to see.

I left mine on or changed for six/seven days I think. At least the first time, didn’t want to look 😂

forgot about stockings and injections. Injections are horrible, only used after one op though.

saw physio for carpal tunnel today, she’s given some exercises and said she’d talk to a colleague about helping with abdomen. Started CBD and THC today 🤞

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

Oh bless you! I wasn’t so great yesterday but walking to the car shifted some wind and I had 2 big cups of peppermint tea when I got home. I was such a doughnut and only took in one peppermint tea bag and there warm liquid gaviscon wasn’t the same 🤣.

Ha ha ha I’m glad I didn’t look beforehand, I think I’d have really freaked myself out 🤣.

My husband didn’t want to look when I did last night 🫣.

Thanks fantastic news about your appointment, when will they let you know about the others?

I really hope you get some relief from the cbd and thc. Do let me know how you get on x

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

Did you sleep ok? Looks like you were up early.

peppermint tea is so good at those times, some wards have it some don’t.

I use a drop of essential oil when I make it, pretty potent 😂 Hate gaviscon

The only reason I didn’t look at vids before the first op was I didn’t think of it 😂 even watching them my mind doesn’t correlate the two.

That’s sweet, he didn’t want to see you’ve been hurt. Make sure you rest lots, I’m sure it reduces the chance of adhesions forming if you don’t stretch things.

I’ll find out next appointment in a few weeks. NHS but at a private hospital.

I’ll let you know how it goes with meds. I don’t want to take it this morning as I have to go out later, not sure of reaction yet.

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

Hope you’ve had a good day and not too much pain

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

yesterday was horrendous! The gas pain got to a level of no return and my husband nearly called an ambulance. Thankfully he called emergency gyne who gave us some good advice and I managed to manoeuvre out some air. It was gross but my goodness I feel better today. Shattered but so much better!

How’s the cbd and thc oils working?

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

it’s evil, your chest feels like you’re having a heart attack. Glad you’re better. Gynae was very helpful though.

Still take it easy 🙂

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

yes exactly that. So horrible! I tensed up that much my shoulder is sore now so have heat bags on there instead of my stomach for a change 🤣

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

😂, you’re feeling well enough to take a humerus approach, that’s great going so soon.

How is everything settling?

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

well back in bed today got cramps but I’m assuming that’s to do with the hysterscopy I also had?! I think the prostap is kicking in properly now too as been getting very hot 🥵. I’m just so tired it’s annoying but I obviously need it!

How are you? X

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

could be op or Prostrap, when would you be due on?

Are you taking HRT as well? I started Tibolone two weeks after Zoladex.

you’ve been through a lot, all the Endo, bruising. It’s hard to tell yourself what’s gone on when tiny cuts. It’s exhausting 🤦‍♀️

Same as here. May have mentioned, can’t see it 😂 I’ve got a scan to check for protein buildup in the organs on the 9th, one of these radioactive ones. That’ll be fun, I need to fill three hours in between stuff and scan

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

I was due on about now but come on early, the day before op. They’ve given me some of that tibolone but not taken any as yet.

I’m ver my bruised on the outside so goodness knows what’s going on inside. Not as tired today which is a massive bonus.

That’s good! Are they still searching for the cause of your pain?

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

That was a good thing, they can see Endo better during a period I was told. Just very embarrassing 🤦‍♀️🤣

They must have had work cut out getting to areas.

I ended up with bruising after last two. I don’t remember there being any after hysterectomy.

I am, medical profession aren’t so keen 😂 symptoms fit but anyones guess. They know they can’t fob me off 🤣

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

I’ve gone past embarrassed now after all the pain 🫣🤣. I suppose looking at the bruising does show they’ve had a good fish about which is reassuring.

These hot flushes are getting worse. They’ve said I can have the prostap for another 3 months but I’m wondering whether to or just give my body a break! The symptoms are just going to get worse aren’t they?!

That’s good they know that! Good for you as you have a right to all the tests. I really hope you start to get some answers.

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

I know 🤣 the doctors end up more embarrassed than I do. They aren’t used to directness 🤣 after Feb op, a registrar/junior doctor came round and wanted to look, lifted up top only to show all tummy but he was horrified for some reason. He remembered me at A&E for gallbladder a few months later. Didn’t like him at all though, one of those who’ll be up his own backside 😆

speak to Gynae about starting the HRT, you can ring the ward and they’ll ask for you. Ask about not doing the Prostrap to see if it settles. Zoladex did nothing for me apart from put BP up.

Hopefully symptoms, pain at least, will improve. Some women seem to notice a difference fairly quickly. My 🤞 for you.

I’m not a good example as other things keep joining in that they’ve missed along the way 🤦‍♀️ I don’t want the scan to be positive but even if it is I’ll at least have answers.

I’ve got call with GP tomorrow as a follow up from starting Duloxitine for nerve pain. Be interesting to see if he’s noticed I’ve started the cannabis.

How is pain today? Forgot about arnica tabs for bruising.

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

horrified of what? Has he not seen a woman’s stomach before?! 🤣. I’ve met some lovely docs but there’s always one that’s got a massive ego.

I googled alternative hrt and came across a tablet with cbd oil in it!! I have CBD oil here so took one this morning and I’ve been fine all day. It does state via there instructions that need to take them for 2 weeks until notice a difference but I’ve already done that. Going to take one tonight too. Will see how I go on that. Then maybe just take one each evening before bed. I prefer the natural stuff. All the cancer related stuff on the hrt instructions puts me off it. How are you doing with the cannabis stuff?

My friend says that about her tests. Don’t want anything bad but wants something to come so it can be fixed. I don’t think we give ourselves enough credit, we know our own bodies and what’s wrong. I knew I had endo before the symptoms got Uber bad. It was just getting a gp to refer to gyne.

Have you noticed the nerve pain ease with the meds? I hope you’re ok?

Pain is fine thank you. It’s just this bit of energy I get then floors me. A little walk felt like a 5 mile jog!!! And not in a nice way

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

There are some very nice doctors, some you feel you can trust more than others. Never met Gastro, he’s one that thinks he knows it all.

That’s brilliant if you’re noticing a difference already with CBD. Has it helped with tummy as well?

I prefer natural too. I’ve tried loads of different things, nothing worked in the past. Definitely eaten a little more today, I’m taking the THC around three to give an appetite 😂 at least in theory!

I never will understand why it’s so difficult to get help from a GP, that series GP behind closed doors, they refer all the time 🤷‍♀️ 😂

So frustrating and then it comes across that we’re stressed 😡

Pain isn’t as bad but as soon as I sit upright or stand it starts to come back again.

It’ll take a week or so before you’ll want to walk far. It’s exhausting doing much at all.

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

hi sorry for late reply. I’ve been quite poorly from the zoladex, my heart rate went right up and I was having adrenaline rushes which felt like a heart attack. Nearly 7 weeks after having that horrible jab and I’m still not right. I never thought I’d say this but I want a period so I know I’m back to normal!! Hope you’re doing ok?

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

Hi

Not good, it does do that, I only realised after I stopped it why my BP had risen. Your body will settle from those effects, it’ll vary but I hope you’re back to normal very soon.

It’s crazy we end up wising for some crap above other crap 😬🤦‍♀️

I’m same as, cannabis is helping to a degree. Still waiting for heart scan. Dietician did a load of blood tests, B12 came back high and now challenged GP telling me they won’t retest for three months, I’ve pointed out that this can cause organ damage. I don’t think they took onboard it was high not low 🤦‍♀️😂 waiting to hear back

AmyPeeps profile image
AmyPeeps in reply to Moon_maiden

oh crikey so you had a similar experience then. Vile stuff I found!

I’m glad the cannabis is helping and hope the gp gets back with something tangible rather than fobbing you off!

You’ve got this, it’s just such a shame you’re having to battle so much

Moon_maiden profile image
Moon_maiden in reply to AmyPeeps

I persevered with it as Gynae said it could take two to three months to settle, never did.It is vile, does seem to work for some.

I hope so, it could easily be negligent, they can’t be sure liver isn’t affected. Be interesting, probably kick me out 😂 that would look good 🤣

I’d suggest to anyone if painkillers aren’t working the cannabis is a possibility, it’s not perfect but very helpful at times.

How are you today?

Liloldme1 profile image
Liloldme1

hiya,

I started on prostap Aug last year. I have just had full hysterectomy. Iam in the UK

About 10 days after 1st injection I was experiencing full on medical induced menopause. I contacted my gynaecologist and requested some sort of hrt to help with the night sweats,flushes and aches. I was put on tibilone which helped alot at first. The last couple of months it was like it was not strong enough and the flushes and night sweats started again.

Now I have had the full hysterectomy and in a surgical menopause my Dr has changed the HRT to mor suitable type.

AmyPeeps profile image
AmyPeeps in reply to Liloldme1

thanks lovely I’m about at that stage now and they have prescribed me the tablet you said. I’m going to try it but symptoms haven’t been too bad so far. I’m glad the hrt is helping. How are you finding having the hysterectomy ?

Liloldme1 profile image
Liloldme1

Hi

It still early days and healing well. Best decision I've ever made. No more pain.😀

AmyPeeps profile image
AmyPeeps in reply to Liloldme1

that’s fantastic news. I’m so happy for you.

Alisonclements profile image
Alisonclements

Hi Amy

I was wondering how you are. I had my first injection of Prostap last week as the hormones I was previously on gave me blood clots on my lungs. They are worried I will haemorrhage on my next period. I had some black blood yesterday and thought it might be the beginning of my period but it’s stopped today. Did you have a period after your first jab? If so, how was it? Hope you’re ok x

AmyPeeps profile image
AmyPeeps in reply to Alisonclements

oh gosh I hope you’re ok! I’m so sorry but I literally have nothing good to say about the zoladex injection. It’s been 7 weeks since I had it and I’m still not right. I had a bleed 2 weeks in and it was pretty much ok. Clotty but that wasn’t strange at the time. Since then my heart rate increased and increased to the point my husband called an ambulance as he thought I was having a heart attack. I couldn’t breathe it was vile. Was all very dramatic. Thankfully I was ok and a&e could only put it down to the zoladex causing what they can only explain as an adrenaline rush. My whole body was tingling like it was being electrocuted, sweaty cold hands, couldn’t breathe properly and my heart literally felt like it was coming through my chest. I had to hold on for the ride. It was horrible and very scary. I’d had a couple of hot sweats before that so hadn’t seen the need to take the hrt along side it. I do wonder if I had started it when I had the jab I wouldn’t have had such an horrendous reaction. I also have adhd and am very sensitive to hormonal changes.

Isn’t the black blood old blood? I hope you’re ok too? We really do go through it don’t we! X

Alisonclements profile image
Alisonclements

Oh Amy, I can’t thank you enough for sharing this as what you have described, exactly the same happened to me but I put it down to a panic attack. On the evening of the day I had the injection, I was happily cooking away, was in my pyjamas relaxing with my husband watching the football. All of a sudden I couldn’t breathe. It was so scary. My heart rate raced and the only way to calm my breathing was to stand outside and breathe slowly to try and keep it under control. So perhaps it wasn’t a panic attack after all, which I thought it would be and I was sun consciously worrying about haemorrhaging but at the time, I wasn’t thinking about that, just living cooking with my new Ninja lol. Thanks to your comments, it sounds like we both had a reaction to the injection. I agree how scary it was and I wasn’t even exerting myself at the time.

I now believe the black blood was old blood, you’re right but confused now that I’ve stopped because I have all the signs a period is on its way which when it does arrive and as soon as the flow becomes heavy, I have to go to A&E who will transfer me to the gyni emergency ward in preparation for haemorrhaging procedure and a blood transfusion.

I suppose the real period will come in a few weeks then. Thanks for replying so quickly, as you can imagine, I’m petrified as being on blood thinners my gynaecologist has said my situation is life threatening.

You’re right. What we could through is so unfair isn’t it

Sending lots of love xx

AmyPeeps profile image
AmyPeeps in reply to Alisonclements

oh my day!!! Yeah that defo sounds like it’s not you. I’ve been the same. Was sat happily describing my symptoms to the doc but my body wasn’t in tune. It wanted to go into heart attack mode. How many injections are you due to have and have they given you any hrt to take along side?

That does sound super scary but I’m pleased they have a plan for you which must be reassuring. I really hope you’ll be ok. Sending lots of love xx

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