Prostap and livial

[Chels]

So I'm 23 stage 4 endo started on livial and prostap before I have a double surgery as I have endo in my bowel amongst other places and I have a lession in the same area. Side effects seem to be too much to handle some days from the swelling, pain in my joints stomach and ribs the sweats head aches and I'm losing weight pretty quick as my apetite isnt the best since starting this, let alone I can almost feel the pain as my food is digesting. Anyone have an ideas to help with side effects?? I would come off my meds but I need to have 3 months course minimum pre op. Thank you

[Mewbookitty]

Hey! Did they offer you any hrt to take? I didn't take mine but I had the same symptoms because when you first start the prostap you often experience a spike in oestrogen levels which exaggerate your endo symptoms so this could be why your suffering so badly. Unfortunately the flushes don't seem to disappear I slept with the window open for 6 months!

[Chels in reply to Mewbookitty]

I have livial tramadol naproxen and a few other tablets I take which he said would be ok for me. Getting in touch with the consultants is hard enough so just seeking advice until he can contact me back

[Chels]

Just treated through hospital as normal however I have 2 gynaecologists one at heartlands and one at good hope. Well I have the consultant taking away the cyst and endo and a bowel surgeon to deal with that area as it is in the sigmoid colon and is making me bleed from the back :-/. Tbh I feel a lot worse on these however he said because it's spread so quick he needs to intervene with the pro staple etc so it almost stops the growth mainly for it being in my bowel. I'm ok again now however last night I couldn't move the pain was as if my body was being crushed. Not sure what I should do. Does it get better or worse if I keep taking it. As I'm struggling to get up let alone go to work

[Chels]

Now I'm worried I have seen a specialist in the area at good hope apparently hr is anyway thats what my consultant from heartlands said hence why she referred me to him and he is the one who has put me on this pro stap my pre op is tomorrow and he wanted me to take the meds 3 months before and 3 months after the surgery and wants both surgery's done in one.

[mollymm]

Hey there. I'm so sorry you're having such a rough time. I really really feel for you. I'm in the same position and am trying various things I thought I'd share with you. Sorry this is long! I started prostap a month ago for the same reason. Need a lot of repair work done to my bladder and bowel etc as well as the endo removing. I'm getting terrible joint/muscle/bone pain and constantly feel as though I've got the flu. It's been really getting to me because I don't feel as if I'm actually living. My consultant has said that I should have injection 2 today but that if after this the side effects don't go I mustn't have any more. The specialist I've just been assigned to (who's a eminent endo specialist) has said that I don't need to be on the prostap pre op as it won't make a difference, but wanted to try and eliviate my symptoms while I wait. On the other hand my usual consultant who did my last op (lovely but not an endo specialist) thought it'd help the op which is why she precribed it. If it gets no better this is definitely my last one. The endo and damage pain is no better but the side effects are awful. However. I have started doing some stuff to help which I'm feeling positive about. I'm throwing everything at it. Yesterday I had a yoga therapist come to the house. It's £25 for a 90 min session and she specialises working with people with disabilities and injuries etc. She'd spoken to her supervisor about my condition and treatment and symptoms and designed a session specially. It was brilliant. I nearly cancelled as I felt so ill but I honestly felt loads better for 3 or 4 hours after. I'm going to try to do some every day then in two weeks she'll come back and alter the programme according to how I'm feeling then. I'm usually mega fit but useless at the moment. I think doing some each day may help balance my body. Also I started taking some very expensive but amazing supplements a week ago. The compsny have a medical team made up of drs who check what meds your on and check the advice that you've had from their rep to ensure it'll work with your meds etc. And that its right for you. I felt better for the first few days I've felt really poorly since Monday but I'm having my poor old dog put down tomorrow so i think the stress of that is making my symptoms worse this week (the nurse suggested that when I went for my second injection yesterday - the prostap had gone missing so I'm back again today to have it). I also tried a session of energy work last week similar to reiki. It was really weird. The woman immediately put her finger on the exact point of my worst pain in my pelvis without me telling her. In all honesty the endo pain was a lot better straightafter the session for a couple of days although I felt even more tired for a couple of days after too. I'm going to try to have a weekly session because I think it'd help and have a cumulative effect. I don't normally spend money on myself but I desperately need to feel normal again as I'm a single mum running my own business with a lot of traveling. Thank goodness I'm not busy at the moment. Earlier in the year after my op I was straight back to work because I had to be, but it's a quiet couple of months now so I'm trying to get myself together before it gets busy again. I've also thought about acupuncture and also craniosacral therapy as I've heard of people having good results with them, but had to be a bit selective. Also usually I'd try one thing at a time but each of the things I'm doing is for a different reason and so given how awful I'm feeling I'd rather go for it all at once. I don't know if these things will be useful to you but thought I'd not them down. I'm trying to be positive but the situation with my dog on top of the pain is making it challenging. I think trying to be positive is massively important if seemingly impossible some days. I really hope you find something that helps. I'm definately not having another course of postrap of the side effects continue. My consultant had said that she doesn't want me to because the side effects are too severe. It's worth talking to yours and at least asking them how they'd feel about it. There seem to be split opinions about how much help it is to the op. I suspect that as the endo specialist I'm under says it's not necessary then it may depend on the experience of the surgeon. I so hope you get some relief and the crappy side effects go for you. Sending much love and positive thoughts for your recovery. Molly b

[mollymm in reply to mollymm]

Ps. I'm on Hrt too but it hasn't stopped the joint/muscle pain side effects.

[Chels in reply to mollymm]

Thanks for your reply molly I really appreciate you taking time to explain your experience which is literally the exact same as mine. I keep trying to do exercise but then my hips really don't like it I have my second injection in 2 weeks but am in the hospital for my pre op so will try pop down to talk go someone about the side effects because my life is so limited. I'm big into spiritual healing however with moving house I'm a fair distance away from 5he church :(. It's especially hard because none of Mt family and friends really know the pain or uncomfort I feel. Glad your having a positive tho xx

[mollymm in reply to Chels]

I completely understand! I won't let anyone see how bad I feel and on the odd occasion I do say anything about how awful I feel I'm all smiley when I say it, so I know they don't get how bad it is. It's so hard isn't it? You don't want to sound wingey or bring yourself down further, but it feels really lonely and isolating to be in pain alll the time. I forced myself to do 20 mins of the really gentle yoga she prepd for me this morning. I could barely move before, but after 20 mins and a bath I did feel a bit better. Feel rubbish again now but even a couple of hours feeling a little better helps so much. My hips get locked too and my knees. The consultant was almost peeing herself laughing when I said my hips got locked with my legs wrapped round my boyfriend when we were having sex. TMI I know, but I thought it might make you laugh too! Laughing is definately good for the pain! It's s shame you can't get to your church. Anything that makes you feel calmer and more whole is amazing when you're suffering I think. If you decide to come off the prostap will you let me know how you get on after? I had my second today and am really scared that I'll have this for another month. I'd love to know how soon after stopping you start to feel human again. I'm soooo looking forward to that. Keep strong honey X

[Chels in reply to mollymm]

Omg thank god your in the same boat me and my partner got stuck before was really awkward I was crying but laughing because I couldn't move and him stuck too. I often cry after because of the pain it's a life ruined for sure. Yes I will let you know once I come off if I think it's mainly the livial (hrt) that is causing a lot of me feeling sick etc. Feel better now 2 days in bed has helped for sure. Wish I new more people who were local who are going through the same thing ad searching online for help seems endless. How did your injection go ? See I stopped taking my tramadol and naproxen because I get spaced out but my body needs it for sure found that out the hard way had 3 episodes of spasms in the night and had to go hospital in between. Some days I wish I was a man they get the easy life urghh but thank you xx

[mollymm in reply to Chels]

Hahaha. I'm so glad you got stuck too..it's like playing twister nowadays -depending on which joints are locking today😂 The spasms sound awful!! I haven't had that, just locking and pain all the time. I daren't take anything strong because when I did earlier in the year my bladder stopped working and I had to have a catheter. The hospital said it was the morphine and dyhydracodeine and that any strong pain meds are likely to do the same to me. I take codein if it's really bad and when it's awful I have a diazepam. Can't take those if I'm working or on my own with the children though, and I'm usually doing one or both. Diazepam is the only thing that stops the feeling of a trapped nerve near my bladder (which is excruciating). Injection was fine I just want this month to be over so that I can either feel better or come off the tablets and get over the side effects. I hope tonight's a good one for you. Fingers crossed x

[Chels in reply to mollymm]

Least we can laugh or off although you don't find it funny at the time lol thanks honey I'm feeling better however going back to work after 2 days off feels like a crime. Defo feels like they don't understand being men as well. You will have to give me updates on if it improves mine isn't til 16th June u on any other med? X

[Hidden]

Hi,

I have not had the pleasure of trying this drug,but i can give you some old fashioned advice.

Im 42 and if i was asked to take them my answer wld be no.

My theory is that going into surgery, you need to be mentally and physically as strong as you can be to handle it.

I dont think it wld make much difference if you decided not to have it at this stage.

But it will make a lot of difference given your age,to how you feel down the track.

Its a real balancing act between the here and now and the future.

Take the surgery,thats the here and now.

Preserve the bones etc.for the future and give the drugs a miss.

Kind regards.

Rose

[Chels in reply to Hidden]

Hi Rose thank you I think I'm going to refuse my next dose if anything it's made me worse before was hard but I was getting on with it. I heard food does the trick but need to look into it. I went vegan before and it helped so think thats my only option for now. Xx

[Hidden]

No probs,just keep an eye on your vitamin levels before you go in,your b and iron if going vegan before your op mate xx

[Chels in reply to Hidden]

Thanks rose any supplements you would advise I read so many different things online so I prefer would of mouth. Xx

[Hidden]

Hey,

The vitamin b is for energy and healing.

The iron is for the blood loss etc.as endo takes your iron,it feeds on it.

Vit d levels can be checked this is your muscles and will make you fatigued if low.

Kind regards

Rose

[Chels in reply to Hidden]

Rose your amazing will get some vitamin tablets today thank you

[Hidden]

Hey mate,

How are you feeling today?

Rose xx

[Chels in reply to Hidden]

Hi hun I'm actually OK was very drowsey last night kept seeing stars lol but today bit of a belly ache which is normal but walking around with my hot water bottle has seemed to easy it off. How are you feeling? Xxx