Prostap

[Pdoodles]

Hi 1st app with gp since scan all clear .Hi is thinking about putting me on prastap as I cannot go on pill due to blood clot disorder. Has anyone had this for a long term solution?

[uplivity]

Hi there, yes, I have just had my 13th monthly injection of Prostap for temporary non-surgical management of Stage IV Endo + Adenomyosis + 7cm Uterine Fibroid. Please feel free to ask me any questions. I'm happy to share my experiences of this GnRH-a with you.

[Pdoodles in reply to uplivity]

Thank you this is all a bit shocking for me , I haven't been diagnosed with endometriosis but suspect I have it. How does the prostap affect you ? Have you had relief from pain?

[uplivity in reply to Pdoodles]

Yes, I totally know how you are feeling. I've just posted about my current health problems - see my separate post, after responding to yours. It's scary isn't it? The first question i want to ask you is - why is your GP wanting to put you on Prostap? What scan have you had that you say was "clear". Please donlt take Prostap until you have had full & comprehensive investigations. You need a claer picture of what is going on before starting on something like Prostap. Please make sure your GP refers you to one of the specialist accreditied BSGE centres for full investigations. Your GP should not be making a decision about Prostap. This should be something that your Consultant Gynae Surgeon would recommend once all investigations have been completed and there is a clear clinical picture of Endometriosis and it has been staged. This si a very specialist area that requires referral to a specialist centre and specialist investigations & assessment. I was referred by my GP to a local BSGE centre - here is link for you to see which is your nearest: bsge.org.uk/endometriosis-c...

I had an U/S, & an MRI, & a Sigmoidoscopy, & a Hysteroscopy, & a Laparoscopic investigation of my Uterus... & was provided with an a very comprehensive and detailed report about the extent of the Endometriosis and what structures it has invaded and that I have stage IV. It was all of this that informed the decision to try temporary non-surgical management of the condition, as an alternative to surgery: hysterectomy & additional excision surgery including possible bowel re-section with hopefully temporary ileostomy. So, I am now 13 months into my monthly Prostap injections. They were really awful at first, but after the 3rd one things started to settle down and they have given me immense relief. The first 1-3 injections completely wiped me out for about 2 weeks - extreme exhaustion, barely able to get out of bed, immense aches and pains in my back, hips & pelvis. hot rushes every 45 minutes, up weeing 6 or 7 times a night, sleep deprived, severe mental fogging, but... once I started on some add-back bio-identical hormones as well by my 4th Prostap injection I was really feeling the beenfits of not having periods any more, not being in pain all of the time and not being in immense pain 5-7 days a month & losing that time off work every month, no more painful bloating & swelling of my lower abdomen, no more pain on weeing etc. It has been a life-saver for me. I definitely don't regret it. However, it is fatiguing, mentally & physically and it has flattened my mood quite a bit - I'm not depressed just flat; difficult to explain. I suspect I will be stopping the Prostap in the next 2-4 months in preparation for surgery Spring 2017 - I'll know more on 14/11/2016.

Please make sure you are properly assessed by a specialist BSGE centre before you embark on the Prostap journey. What symptoms are you having that make you think you might have Endometriosis?

I hope this has been helpful & I hope I have frightened you. Please know that not everybody experiences what I have experienced with the Prostap - some women get on fine with it from the start, some women can't cope with it & stop it... we're all different.

If you want to ask anything more please feel free. Are you in the UK?

[Pdoodles in reply to uplivity]

Thankyou so much for your reply at the moment the more info I have good or bad is great. My gp has actually been fantastic and I think myself he's not sure what to do to help ,he sent me to a specialist who was very unhelpful and discharged me after a 15 minute app and told my gp a ct scan would show endometriosis if I had it in the thoracic region which is where my pain is .

[uplivity]

Both CT scan & MRI are the diagnostic procedures for TES - was your lung CT completely clear? If it was, why on earth is your GP suggesting Prostap if there is no clinical evidence of TES? I don't understand. You are experiencing thoracic pain of unknown origin?

Any other symptoms?

Are these links to scientific articles about TES helpful:

ncbi.nlm.nih.gov/pmc/articl...

ncbi.nlm.nih.gov/pmc/articl...

laparoscopy.blogs.com/preve...

Prostap is a very extreme treatment approach to be considering if there is no evidence of Endometriosis. You need to know what is causing your thoracic pain. What about further / other investigations in addiition to the CT scan?

You could research whether there are any cases of TES not shoing up on a CT scan, but perhaps being detected via MRI & / or Endoscopy?

[Pdoodles]

I have spoke to people on groups who have thoracic endo and although it can show it doesn't always, have explained to my gp . my symptoms all suggest endo maybe diaphragm . I have had symptoms for atleast 13 years on and off but the last 8 months they are with me most days. I have to go back to see him next week to talk more about it . Thankyou for your replies .