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
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AmyPeeps
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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?
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
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.
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
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.
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.
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?
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.
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.
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 😢.
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 🤣
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.
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
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?
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?
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.
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 🤞
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
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.
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!
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!
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
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.
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.
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
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.
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?
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
Have they said how long it’ll be? Will there be a colorectal surgeon as well? Trust me you want everything that needs doing in one, adhesions, look everywhere. It’s scary I know, swore I’d never do it, amazing what pain does to you 😂🤦♀️
I had appendix and liver adhesions removed nearly two weeks ago. I asked them to take appendix, best thing as that area feels so much better.
oh crikey, I know you were in a lot of pain still when we last messaged. Has this stopped that now? I also have been taking cbd oil and that helps lots too. How are you with no ovaries?
I think it’s helped, went shopping today and not nearly the same level, 🤞 it doesn’t catch up later 🤣
I tried cannabis and CBD, didn’t seem to do much, but if it’s been appendix all this time it’s not surprising. That’s great you’re finding it helps, so many different strengths out there. Oramorph worked just as well and free 😂
Seems to be ok, I’m taking Sage as an alternative HRT, my hormone levels were ok at last test. I’m of the view to test occasionally rather than Drs just guessing. Looking pic you’re younger so HRT will likely protect your bones, I am technically menopause age ish.
Have you discussed it all with Gynae? There is an app, Balance there’s some good info, and a Facebook surgical menopause group.
that’s great it looks like they’ve found the answer for you and I really hope it helps and you can live in a lot less pain 🥰.
I’m 41 and after the zoladex ran out I was still peri menopausal 7 months later so started hrt and found it great. It’s the progesterone I don’t get on with.
I’ve actually just finished chatting with gp surgery and gynaecologist secretary and as I’m worried about how I’ll be with no ovaries, I’m willing to try the zoladex again but this time with hrt so I’m hoping I get on ok and it rids my pain. I’ll have the hysterectomy then.
That’s great you’ve spoken with them and a solution to move on with at the moment. If Zoladex helped before that’s a good thing. Did nothing for me but if it was appendix behind it all I’m not surprised 🤦♀️
yeah that’s true. If your pain wasn’t cycle related then I suppose it’s going to do nothing. Annoying if it was the appendix all along and you’ve been through all of this!
If they give it the go ahead after last times disaster I’ll have the month dose with the Oestrogel I’m taking and if it helps I’ll continue until I have the hysterectomy and ovary’s out etc. if it doesn’t work then I’ll just have the one and leave it x
I have to remind myself I’ve had all the other stuff 😂 Endo, fibroids, gallbladder, adhesions 🤣🤦♀️ You forget when things don’t change. Wish I’d suggested appendix a long time ago, mentioned pain there so many times.
That’s a really good plan, no point putting yourself through anything that doesn’t work, really isn’t. I kept going the full six hoping each month would help.
it’s so strange that they didn’t spot it! How are you doing after shopping? I hope the pain didn’t come back. Yeah exactly! I’m just waiting to hear back off them as they want to ask gyne xx
I’m assuming it looked normal from the outside, but Endo can get inside according to research. Have to see if one of the photos looks like the appendix. Hormones are associated with the appendix and so many women have theirs taken out when the Endo pain is mistaken. When I was younger a couple of times I ended up staying overnight in hospital because of the pain there and then period would start.
Today has been much better, mentally as well. Try not to let anyone tell you you have anxiety with all this.
That’s great you’ve got them doing the right things 🙂 that’s a real plus.
Endo is vile isn’t it. My dad was so shocked about never hearing about it, then me being diagnosed and then having conversations and realising how common it is!!! It’s so sneaky too where it just pops up inside and outside. Causing the pain it causes! It must have been hard having bits of you taken away and the pain still being there. I really hope you can move forward comfortably now.
My GP surgery and the local gyne has been really really good tbf.
Yeah, I know what you mean, I’m anxious about it all and have so many questions but I’m not suffering from anxiety, if that makes sense. I feel there’s a difference.
What I am feeling is hacked off that I have to go through this at all but fortunate that it’s not as acute as some of the horror stories I’ve heard and that it’s not cancer.
Mines not great at all but when I read about bowel endo or it being on lungs etc I feel fortunate.
Sorry for the rant. The more I look at total hysterectomy, the more I don’t want one 🤣 xxx
It really is. It’s great your dad listened to you about it, he obviously cares a lot.
It was frustrating because they try to tell you the body holds on to pain through the nervous system, I am no where near convinced it does, even more so now.
Keep that GP 😂
There is definitely a difference, I know exactly what you mean. Hormones have had me in tears many times but I knew what it was just couldn’t stop it 🤣 Zoladex made it worse for me.
It’s hard to compare as some people have higher tolerance to pain etc. Very much an individual thing. I always thought I had a high tolerance to pain but this was another level entirely.
Glad you don’t have it elsewhere, it must be awful.
Don’t apologise 🙂 the forum is great for those 😆
I always told myself I’d never have one, but boy I couldn’t wait to get rid 😂 not much left now that’s spare!
ahh ok, so if they get all the endo when they take my uterus ovaries out etc etc then it won’t come back? Or less likely to?!
I’ll give that a go. Thank you 😊. I use those stick on ones for when I have to go out and the pain won’t shift. They’re pretty good to be fair but I’ll defo give the cool a go next time it gets mega painful!
Ha ha ha yeah I know exactly what you mean. I have felt like it’s a mass that just wants out before, like literally felt that plus I sat down earlier and shouted out in pain as it felt like someone just stabbed me up the vagina!!!
Hopefully I’ll hear back off gp soon so I can start the zoladex. How are you today? X
That’s the theory, they don’t know for sure. It hasn’t come back for me so far. Make sure they are going to get rid of all the Endo, leaving any gives a greater chance of spreading.
😬 that made me cringe, some pain you forget ever happened. Even now I have to think back to the worst bits, your brain lets you forget . There is some good afterwards 🙂
Physio keeps trying to tell me brain holds on to pain, I think it’s rubbish, if we are in pain there is a reason. I’ve had no low abdominal left pain since op.
They can’t have it both ways 🤣 we know pain is real. Physio commented that I stuck to my guns about wanting to do anything to get rid of the pain 😂 it’s overcoming that sort of thing that many will find hard to do.
I’ve felt so out of it today lol. I’ve got adhd as well and progesterone at this time of month is not my friend. Oestrogen is great but it’s what feeds the endo. Kinda a sucky situation but I’m keeping up with the hrt.
I’d think ADHD likely goes with hormone diseases at times. It’s a difficult balancing act at the best of times. I don’t miss that side of things that’s for sure.
At least there is beginning to be more research, hormones are so difficult to quantify. GP hasn’t refused a test yet when I’ve asked though, which is fairly good going. I think it’s important to check.
ahh ok. Are you on oestrogen after your hysterectomy or have you kept your ovaries? I’ve been enjoying some time with the kids thankfully. How about you?
I’m taking Sage as a natural HRT, seems to be working. I had everything taken out, seemed the best thing to do. Reduces the risk of Endo coming back, in theory at least 😂
They’ve had a good half term by the sounds of it 🙂 I’ll do some garden and house cleaning in a bit, overdone things this week, think I’m still healing.
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.
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 ?
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
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
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
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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