Ultrasound shown Endo on Ovaries and Bowel.

[JadeH92]

Hi guys,

Just wondering if anyone has been through something similar and could offer some advice.

Went to see my consultant 2 weeks ago and we both pretty much decided Prostap with hrt was my only option. However he sent me for a ultrasound scan (to be 100% no cysts or endometriomas were causing my pain). Whilst waiting for my scan I went to see a pain specialist, we have decide to try amitriptyline on a low dose 10mg (currently waiting for the prescription). The prospect of my pain reducing without the nasty prostap is really appealing to me, so I was thinking about holding off on them and seeing how the painkillers work. Then I went for my scan and was informed that some endo has returned (only removed November 2015) on my right ovary and on my bowel. No I am really stuck with what I should do.

If I go on just the amitriptyline will the endo keep growing? Will the symptoms of Prostap be worth it possibly stopping the endo from growing?

Any tips advice or personal stories will be really appreciated!

Cheers

Hol x

[janelle123]

Hi, I've been through the same. I tried the injections and hrt and to be honest, they did nothing for my pain so I stopped after 3 months as I felt the side effects weren't worth it. I had an mri 7 weeks ago and finally have an appointment today to find out my results and see what options are left. I had a laparoscopy last March and they discovered a chocolate cyst on my tube and my right ovary had stuck to my bowel. Unfortunately they were irreparable so both was removed. I'm expecting to hear today that the endo is in my bowel. I think the only thing left for me is to have a total hysterectomy and probably bowel surgery. The pain is unbearable and I'm so fed up and frustrated. I really hope you find something that works for you xxx

[JadeH92 in reply to janelle123]

Hi Janelle,

So sorry to hear you have had such a rough time! A total hysterectomy is extreem treatament, I'm presuming you have tried everything else? I hope you get some good news today, I'll have my fingers crossed for you!

Thank you, I'm want to start the amitriptyline (hoping they will ease the pain) and maybe wait until next March to have surgery to remove all the endo then to start the injections to prevent it from growing back? But I think my consultant will want me to start the Prostap as soon as.

Such a horrible condition, I'm not surprised you feel fed up, hopefully you will receive some positive news today.

Thank you for your reply!

[Katie80]

Hi, I have had a similar experience. I have prostap gor 12 months and then revert to the pill continuously for 12 months and so on. I had a huge cyst the size if a grapefruit on my right ovary, which completely took over and destroyed the ovary, so had it removed. I have had endometriosis in bowel for several years and surgery kept shaving bits if bowel away. On last surgery 9 weeks ago, we discovered that the bowel was deeply penetrated with endometriosis. A large section of my large bowel was removed and as a result of complications I was left with a temporary illiostomy. This will bd removed in 4 weeks, thank god!!! It's been horrendous both physically and mentally but it was needed and actually could of saved my life! Thankfully deep penetration of endo in bowel is very rare. If the endo on your bowel is superficial and can be shaved away, I would definitely say go for the surgery and get it removed. I'd hate anyone to go through with what I have. If you want to ask me anything, please don't hesitate to message me.

Really hope everything goes well for you

Katie xx

[JadeH92 in reply to Katie80]

Hi Katie.

Gosh sounds like you have been through a terrible time! Glad the illiostomy is reversable and like you say it was a necessity to keep you alive so a small price to pay really! I hope you will be on the mend very soon!

I only had surgery 11 months ago to remove some endo and again 12 months before that, so don't really want surgery every 12 months. Plus I am also a student nurse at the end of my training (6 months left) and surgery would be really inconvenient. Do you think it's wise for me to hold off? Or do you think things will get worse if I wait another 6 months.

Thank you for your reply and support!

Hol xx

[JadeH92]

Hi Lindle,

Thank you for taking the time to reply. I am confused as to your questions about who is advising me this? I am under a pain specialist (the person that advised me to start on the amitriptyline) and I don't think my gynaecologist or hospital is a BSGE (to be honest I don't even know what that is haha). The only advise I have been given was before the scan. This was to see the pain specialist, have a scan to make and start the Prostap injections with Livial add back therapy.

I am going to contact my consults secretary today, to see if he has reviewed the ultra sound scan and what he suggests from that.

However I'm really stuck, because to have surgery between now and March 2016 it could really impact my degree. However I'm worried if I wait things will only get worse.

Thanks again for your reply,

Hol xx