I'm just writing to see if anyone has been in a similar situation to me, I'm really feeling unwell and not sure what to do.
To give you the short story I was diagnosed with 3 issues last year, fibroids, endometriosis IV and chocolate cysts on both ovaries (both fairly large). Had a laparoscopy last May (which is when they found the endometriosis) but they were unable to do anything about the right cyst or the fibroids as everything is stuck to the back.
I was due to have a hysterectomy at the end of April but due to the current situation this is obviously not happening.
I had been on Prostap injections for 6 months the last being December 2019. I didn't have a period until March and while not pleasant it was as horrific as I thought it would be.
Moving on to April however and on Wednesday I started getting really horrible abdominal pains and they didn't feel like the "normal" period pains.more intense on the right hand side but basically all the way across.
I put up with it on Monday but yesterday morning I did an e consultation with my surgery and my GP called me back not long after. She prescribed me a higher dose of codeine (I'm already on Naproxen twice a day) and said as a baseline I should be taking paracetamol 4 times a day (first time someone has mentioned that and have you tried finding paracetamol lately?!?).
I had all this pain and nothing seemed to be happening until late yesterday evening. Last night, and still a little today, I have been running a temperature not too high but still high. I also started to bleed HEAVILY I've got through 3/4 of a box of tampons today even before all this and in March I didn't bleed that badly.
The codeine has helped but if I don't stay on top of it the pain comes rushing back in all its glory.
I just feel awful. I'll be honest I have thrown myself one or two pity parties, had a cry and then eaten some chocolate. I'm putting this down to hormones and being over tired.
I'm wondering if I could have an infection? Or if my ovary is twisting? It does feel a little similar to how this all started (thought I had appendix problems but GP said it was probably a cyst rupturing/twisting).
Sorry that I've gone on, I just wondered if anyone had experienced similar? With everything that's going on my mind starts to go wild with the what ifs.
I should point out I have no symptoms of Covid 19 or is all just abdominal issues apart from the temperature.
If you've read this far thank you
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Random_Brunette
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I think I'm going to ask for the paracetamol to be added. I work for a health and beauty company and I can't even find any there!
It was new news to me that I should be taking so much otherwise I would have been a bit more prepared! Thankfully me and my neighbour have some sort of dodgy drug deal, she's given me 4 packets of paracetamol and I have given her 6 bamboo sticks for her runner beans
I've had many blood tests done as they thought it was ovarian cancer at the beginning. I've had an internal scan but no MRI.
I literally was due in for surgery, had my pre op and everything when Covid 19 hit us.
As I've said to the others if it's not a burst cyst then I'll go back on Prostap. I had horrible side effects but it was still much better than this!
Bartering is great, I’ve done it loads in the past.
Sorry your op is postponed, particularly tough at the moment.
No one has so far mentioned cancer, I’m fairly sure the consultant would have noticed during the lap if there were signs, it’s one of his specialities. Haven’t wanted to ask.
I’m assuming that doctors have no understanding and will reiterate every time I can how crap it is. 🤣
Hi sorry to hear you are suffering, it sounds like a cyst has burst inside, this has happened to me a couple of times prior to my hysterectomy. The pain will calm down, the Dr probably would not want to admit you to hospital at this time, as they would only monitor you. Try and rest and keep the pain under control, it will pass in 24 - 48 hours in my experience. I hope this helps put your mind at rest. Xx
I think it's a burst cyst too but it's so different to the last time. Last time it was excruciating pain, then it all went to one point and then suddenly stopped (which is why they suspected appendicitis).
This time its different as in the pain is constant, it's stronger on one side but pretty much all over. Last time I had sickness and diarrhoea this time it's pain, temperature and you know that feeling when it feels like you have no skin and everything is sore? That feeling (sorry, it's the only way I know how to describe it! )
It's been 3 days now and I do feel a little better today. Still feels like my lower half has been used as a football but a bit better.
I don't want to go back on Prostap as my body hated it (I've also tried zoladex)but if this is linked to my period and isn't a burst cyst I'd rather put up with the Prostap side effects!
Hi sorry to hear that your in so much pain, I agree with tinkerbell16, it sounds like a cyst has burst, I had this happen and the pain is out of this world! I ended up in a&e and on Morphine, I now take 1 naproxen twice a day, 2 codeine 4 times a day, 2 paracetamol 4 times a day and Morphine if they dont help, I'm also on the depo injection which has help with my pains too, I hope u start to feel better soon xx
I think I'm pretty much taking the same as you but for the last 2 days I've just been taking the codeine and paracetamol. I might throw the Naproxen back in there and see what happens.
Forgive my ignorance but what is the depo injection? Is that the prostap or zoladex type drug?
As I've said my body hated both of these but if this isn't a cyst bursting and is how my periods are going to be until I get surgery I think I might put myself back on them! I'm working from home at the moment but once I go back I would have to work from home a week a month which they would be fine with but I don't want to get into that situation.
Your very welcome, the pills dont take the pain away completely but enough so I can function most days! The depo injection is a type of contraception as I'm over weight I cant take the pill and I dont fancy the coil so I went for the depo as I needed something to help with the constant pain I was in, it has helped alot as I'm not bleeding while I'm on the injection so that's a plus 😊👍 I'm too w8in for surgery, I was ment to be seeing my consultant at the end of this month but because of all that's going on it's been cancelled and rebooked for july so I'm starting to think my surgery wont be anytime soon 😥😔 if I can help with anything else let me know, good luck xx
Hi. I’m sorry you are in so much pain. From my own personal experience it sounds like a cyst may have burst or if you are on your period at the moment maybe this is the endo pain in full force after being on prostap. When on my period my pain is excruciating and all the way across but mostly on the right side. I have to take 60mg codeine with paracetamol every 4 hours and oramorph in between and sometimes that isn’t even enough.
If you suspect ovarian torsion you should go to a&e and tell them your concern. The least they can do is bloods and an ultrasound to make sure.
I’m pretty sure you can only take prostap for 6 months max so you probably can’t have that again. I know exactly how you feel. I was also due a hysterectomy on the 21st and until I can have it I’ve been given prostap to inject myself and my migraines are everyday and my bleeding has lasted 21 days. Is that the kind of thing you experienced?
I had headaches all the time. Our family seems to be prone to migraines but as its moved through the generations it seemed to get less intense so I didn't get them often but I do get tension headaches. With the Prostap I seemed to have one nearly every day or what felt like every day.
And I was exhausted all of the time. I'm trying to eat healthier and had planned on some sort of jogging or similar but those injections wiped me out, all I wanted to do was sleep!
Zoladex had the same sort of effect but I think it was getting the implant itself that my body reacted to.
However, it feels like March let me off lightly and if this is what it's going to be like every month from now on then I might ask about going back on them because this is not fun at all. I feel a bit better today but still far from being right.
I think it's just knocked me for six, I wasn't prepared for feeling this bad. Up until the illness that triggered it off in December 2018 I wasn't even aware I had anything wrong and here I am over a year later looking as though I'm 4 months pregnant (at the moment it feels like the alien is going to burst out of my stomach!) and taking so many tablets i should be rattling!
OK, pity party over I'm going to break open the Easter Eggs early!
I'm really sorry I have nothing medicinal to add to this, but I just want you to know, you are not alone and there are people like me with endo who aren't nearly as far as you are but I feel your pain. And you aren't alone, I'm thinking of you and hope you find something to ease your suffering x
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