Hi everyone. I've just joined as I don't know where to turn to....
I had surgery two years ago and had endo burnt , didn't really help but they did say it was 50% possible. Took a while to heal though.
I've had my 8th Prostap and I was feeling so bad - tired, dizzy, nausea etc theoughout and it's really effected my life, I can't drive etc. I finally had a call from the specialist who basically told me because the prostap hasn't shown improvement in pain then there's no point having a hysterectomy. He said it may be that my body is used to being in pain and that's why I'm in pain.
He said maybe I should be seen by a pain clinic or check my pelvis incase pain from there. I was distraught. I've pushed myself with injections in desperation, telling myself next month will be better. My life basically on hold as I feel so bad and sick.
It took me 10 years to be transferred to endo specialist and now this. I don't know what to think.
There was no overwhelming improvement with the prostap pain wise but what i did notice was the week leading up to the next one, the pain was really elevated and had migraine etc. I told the specialist this and said maybe i didn't notice difference cos my body was so tired and struggling and by end of month the prostap was running out and that's why more painful. He didn't really answer that. By the end of call i was crying so much I couldn't talk. I'm so scared of being left like this.
Has anyone had similar experience? What steps were taken after your prostap treatment please? I've tried everything, diet etc.
Written by
filous
To view profiles and participate in discussions please or .
So sorry the medical world isn’t listening as usual.
Zoladex (similar product) did nothing for me. I’ve been given the same crap about body used to being in pain, I don’t believe that otherwise I wouldn’t get moments where the pain isn’t as bad as others. It’s a thing they are saying a lot.
Ask your GP to refer you to another Endo specialist for a second opinion. Did you definitely talk to the consultant not a registrar? If you haven’t requested a copy of your records it’s a great place to start. That way you can see what was done at op, scans etc.
If you haven’t had bloods recently ask for those including hormones, thyroid, vit D and B12.
What pain relief are you taking?
I’ve been taking prescribed cannabis last couple of months and I’m sure it’s helping. The pain clinic haven’t helped that much, GP can prescribe the same meds.
I’ve been told it could be nerve damage from Endo but no one is really sure. It could be something else, I’ve got a scan in January. I’m not saying this as a recommendation but I’ve continually gone back to Drs to keep pushing for answers. It’s hard, upsetting, expensive at times and my record looks horrendous but I refuse to stop trying to find out. Bit in limbo until scan though.
I have hypothyroidism but levels ok. I take high dose b12 as I went dairy free for anti inflammatory diet . My pains vary. Its daily either as an unbearable ache which shoots down my leg and sometimes as high as my shoulder. Thats usually my right side. I get stabbing pains in both sides but mostly right. Almost like labour pains. If I cross my legs my lower stomach can feel bruised. After a bad flare up my stomach and pelvis feels like I've been kicked black and blue .
Yes it was the consultant. As I live in North wales I had to be referred to the wirral as there are no specialists in my area. Dont think a second opinion is an option.
I've not asked for copy of my records.
Pain relief i have co dydramol that is the best that works for me but if I'm honest I only take when desperate because it doesn't do that much . My hot water bottle is my best friend. It makes me so tired .
My gp used to say there's nothing we can do and I was under the specialist but now I've been told I'm not getting another endo clinic appointment which has really panicked me because what now. I was sent for a ultrasound by my gp a few months ago, I think they were trying to keep me quiet for a bit while waiting for the consultant. Even the nurse that scanned me said I'm sorry but I'm not sure what I'm looking for here and said she couldn't see anything.
I'm on sick for a few months now because I can't drive and focus . Its starting to affect my mental health now too because I'm so disappointed and scared.
If you do get bloods, it’s still a good idea to check B12 to make sure your body is absorbing it. Mine was high recently but GP won’t retest yet.
It’s a lot to put up with, we know Endo can come back. Did the consultant not offer an MRI or another op to check? You might have to go further afield but you can still request a second opinion anywhere. I think others have mentioned Wales lacks specialists. It’s worth looking at all the hospitals you’d be prepared to travel to. In the meantime you should have an MRI as a minimum. I don’t understand why your consultant has dismissed you so easily. I’m sure they test to see how much we do push to get things.
Ultrasound can work but the person doing it has to know what to look for and there aren’t many about yet. I don’t know why GPs do them, apart for checking other things.
I’ve found records helpful, after Endo excision I discovered that there’d been no colorectal surgeon and MRI vaguely mentioned the possibility. I then had to seek a different team to do another op. That I had back in Feb, then gallbladder out in July.
You’re in pain and GP needs to help. If you don’t want opiates Nefopam is an alternative pain killer. I’ve tried Oramorph and morphine, didn’t have any trouble with either, including reducing and stopping. I use Oramorph occasionally still. Diclofenac suppositories work really well, I don’t use everyday. I didn’t find tens much help, more a hindrance but practically live with heat round abdomen with a rechargeable battery pad.
it’s really hard but your GP needs training to realise you aren’t giving up so easily. I was using econsult forms long before the surgery made it compulsory, that way it’s in writing.
I’ve paid out quite a bit a long the way, mainly with seeing consultants privately, most treatment is through NHS as they transfer you to their list. To get answers, if you can afford it, seeing privately can be really helpful. You get to choose who as well.
testing hormones is important with how you’re feeling. They can be responsible for those moment/days when you feel it’s too much, especially if you know roughly when you’d be due a period you might be able to suss it out. Even with the injection, I’d still get worse. The injections are pretty potent as well.
It’s frustrating, scary, and being in pain is no joke. GP has a duty of care to you. Sorry if I’ve wittered on.
No mention of an MRI at all. I had a look on Bupa webpage how much private consultations are to get an idea. It's out of my budget atm. In a couple of weeks the prostap will be wearing off so I guess I'll see what happens when my body goes back to it's normal state. Are there any side effects of 'coming off' the injections do you know? The consultant did say I can go straight on the mini pill Cerelle if I want but maybe I should just let my body be for a bit?
Hi, definitely ask for MRI so they can review what’s happening. GP can do this.
It can be expensive I know, it’s an average of £240 round here. Maybe Xmas pressie
I’m not sure about side effects now, I had hysterectomy not long after I finished. I think it can sometimes take a few months for body to balance. I was told to carry on with HRT for a couple of weeks after last injection. My BP came down again.
It’s usually trial and error with hormones, Drs hate testing but worth asking if symptoms change. I always think they should be tested to get a rough idea at least.
I'm just feeling rough to be honest. These pains are so unpredictable. Aches around my lower back today. It's 3 am and Ive got up because I'm so uncomfortable. I should be due my next injection in couple of weeks so I'll soon see what it's like without them again.
sorry you had a rough night, it’s horrible being in pain especially at night. Did you manage to the pain to settle? I hope today has been better for you.
I get the same at times, should’ve looked this morning.
I’ve had similar juggles with treatment and pain discussions. In the end it’s been a pick and mix of things that have seen improvement. Some of which has been direct surgery, dietary changes , supplements ( my top fav is high quality Omega 3 and Reservatoral) , pelvic physio work and long term pain management. They all have a key role of bringing back function to my life. So would encourage you to explore.
While there’s an awful lot of pain dismissed and writing it off as being “ in our heads” that causes no end of delays, denials of our experience, exasperated medic syndrome and being passed from pillar to post there is something that’s important not to miss that can be a really useful pain management tool. It’s related to neuroplasticity in the brain and the consequences of frequent and constant pain. It’s too involved for a short post but it’s a real change that can be treated twofold and tackles the hyper vigilance that the body can develop when overwhelmed with long term pain. This maybe what your consultant was referring to but unhelpfully not able to flesh it out for you. Pain teams can take a while to get back as a referral. Sometimes GP’s will use Nortriptyline (which doesn’t have the same side effects profile as amitriptyline) to help with central pain management which has the advantage that it doesn’t have to wait for a pain team to prescribe it can be trialled by your own GP with you instead. It’s not for everyone though. Secondly there is a programme to teach you how to deal with resetting the pain pathways that has strong science behind it called Curable. This you can start using yourself today- I was given six weeks free by my GP and now pay a small monthly charge. It’s based around some of the work of Dr Sauro. For me it’s made a profound change to pain, energy levels and has given me back a capacity to live my life . I was highly sceptical initially as it felt like another “medical brush off “ but am glad that I overcame my first response. They often do free trial periods so you’ve nothing to lose if it’s no use for you. 💝
Have you tried having b12 injections alongside your prostap? Also i see a massage therapist who knows about endometriosis who knows where to loosen my muscles which helps me with my pain. I dont like pain killers so i try to avoid them so This is what I do.
Your specialist is right, sadly if the prostap don't work then usually it is not endo related. However we do feel pain a lot more when we are run down and fatigued. B12 injections are the best thing I ever done. They help with my energy, my mood ect. I also take a multi vitamin supplement to help overall.
Don't give up you will feel better you just have to find the right treatment for you!
Moon_maiden , BloomingMarvellous and Endo35 great contributions to filous 's first post. Thank you all for making our community so caring. I came of this treatment (a few years ago) and the side effects did go away within a few weeks, I had already gone through a pain management clinic so I was very lucky to have a few weapons in my arsenal, but I am so interested in some of the ones mentioned today 💗
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Advice on what to do next!
Unsure what to do next...
Mri results - what next?
Hysterectomy and bleeding on prostap
