advice 2nd prostap jab

[Jonesy05]

9 days post 2nd Prostap injection.

My 1st jab was a few days before my period was due but no period. Feels like I need to have a period as my body built up to have one pre jab 6 wks ago. Woke up this morning with a flat stomach (not had this in along time)! Then by the time I showered and got dressed, my stomach is swollen again. Body feels like I need to drag it about. Aching. Constant lower back pain like pmt. Awaiting hysterectomy. My left ovary is stuck to pelvic wall and my left partial tube is swollen and filled with fluid.

Even with the prostap, I can still feel this pain, pain when opening my bowels too.

I dont know whats normal and what isn’t now. Can anyone relate? X

[Rachel_20]

Hi,

You are not alone, I have had my 3rd prostap injection and I still have constant pain in my lower back and right overy. I also still bleed every month albeit less than I was before the injection. I have mentioned this to the nurse and at my gyne appointment and no one seems to be able to tell me whether this is normal or not. I am currently waiting on an operation to remove an ovarian cyst but have been told that could be up to a year wait and I am unsure whether the injection is doing what it is supposed to be doing or not!

It is so difficult getting any more information or even just speaking to someone to get reassurance that it is the right thing to continue with the injections 😔.

Hopefully you won't have to wait too long before your operation and that will help your pain 🤞.

[Jonesy05 in reply to Rachel_20]

I agree, no one can provide the answers I want. My op will hopefully be Oct/Nov this year they said. I had a large cyst and right ovary removed 2021. I asked them to take it all away then but they didn’t. Now back to the pain etc. Everyday is a battle. So tired too even though I am sleeping. Really hope you don’t have to wait as long as that, My cyst was 10 cm when they removed it and it was awful daily pain. Xxx

[Goiaba in reply to Rachel_20]

Jonesy05 hi both, I’m so sorry you are in so much pain and have no answers. I was in a similar position a while ago and hope my experience can give you some hope and reassurance.

I had a horrible flare up 2 months after my 2nd lap. A massive cyst on right ovary and a lot of endo left behind causing ridiculous amount of pain. As I also have adenomyosis and my endo progresses really fast, the recommendation was for total hysterectomy and ovary gone too (I only have one). Because of the long waiting time, I was given Prostap - first 1 month dose and then 3 month doses. I was really scared because of the known side effects and that this would do what the pill did for years - mask symptoms while this disease keeps growing inside me and causing more damage quietly.

The injection did calm a lot of symptoms down and after 6 months my dr requested an mri to see how things were. It was the first time in 4 years I had relatively good news about my body - some endo had shrank to the point they couldn’t be seen and the biggest cyst had disappeared. However, I now have bowel involvement and 3 new endometriomas. Old large plaques are still there and active.

My dr explained that masking symptoms is exactly what the Prostap does when endo is at an advanced stage. It’s not a treatment, it’s a copying mechanism while we wait for surgery. It won’t stop endo completely (otherwise that be a cure, but there’s no cure for endo), but it slows it down as we can’t remove lesions immediately. If I hadn’t taken the Prostap, I would probably have lost my right kidney and ureter, so overall it was a good plan despite the fear and the side effects.

I am currently waiting for my surgery to happen in sept, and not completely pain free but compared to what we endo fighters normally feel, this is nothing and is manageable with regular workouts and painkillers if bothering me too much. I feel better without HRT - I’ve got no menopause symptoms apart from hot flushes at night (that I have always had even before Prostap) which sometimes makes me believe my endo produces so much oestrogen that I’m technically not menopausal. No scientific evidence here, just me and my thoughts.

I believe the Prostap was the best decision I’ve taken in my endo journey and it saved my body from a lot. I know it’s difficult to be positive when we are in so much pain, but I do think it will get better, your body just needs to adapt and it takes some time.

Lots of love from here 💕💕💕

[Jonesy05 in reply to Goiaba]

Thank you, this has been very helpful.

Just got to keep plodding each day and battling as best as we can. I def think the the prostap has made me constipated and this then has caused more pain as its pressing on the swollen fallopian tube and ovary. Ive been taking Movicol sachet today to help along with increased fibre. Hopefully when things start moving, I will find some relief xxxx

[logit]

hi

I still had pain with the postrap injection. I found having one movicol a day did help with the bowel pain. Even now after a total hysterectomy I still get pain in the area and appears to ease if I use movicol. Sure it’s grown back but banging my head against a brick wall with the consultant and endo nurse. Even told them it felt they were robbing me off

My back pain was also caused by endo growing in my tubes from my kidneys to bladder I had asked prior to surgery if this was the cause of some of my pain as I suspected it was growing there

I found phoning the appointment person weekly helped to get a quicker surgery date think they got fed up with me I explained the pain was getting worse

Hope you get your surgery soon and it helps with the pain

[Allyhold]

I have now been on prostap for about 7 months... it took a few months for my periods to stop, and the pain dissipates for 3 weeks out of the 4 till next jab. The drawbacks appear to be joint pain... and hot flushes again... but have been able to start losing weight for the first time in a very long time... I am waiting for a hysterectomy, and it can't come soon enough. I was allergic to tibalone, and want to stay off hrt until after the hysterectomy. Just stick with the prostap... it is not ideal,but am finding it better than the alternative.

[Jonesy05]

thanks everyone.

I have had several sachets of movicol since yesterday and since then, things have been slightly easier for me. It must be the constipatiin giving me grief as the pelvic area, back and side feels easier since Ive been to the toilet. GP has prescribed extra movicol so will continue with these twice daily for the time being x