Prostap and delayed hysterectomy - can anyone share anything similar?

Women's health
1

Hello all

I have posted in the ovarian cyst forum up until now, but am feeling really confused about what's happening with me so I thought I'd seen some advice from in here.

I have had symptoms for around 7 years and after multiple visits to GP and various trials of pills, as well as the mirena coil I finally saw a consultant who took me seriously back in May. I had a couple of ultrasounds which showed two largish cysts and a blocked Fallopian tube (hydrosalpinx).

The Consultant booked me in for surgery to remove the tube, ovary and the cysts two weeks ago, and also an endometrial ablation.

I was taken down for the surgery, and when I came round, I was devastated to find that only the ablation had been done. They'd put the instruments in for the laparoscopic removal but found a large tubo-ovarian mass instead that was stuck to the bowel, uterus and pelvic wall. She was unable to carry out the removal of anything.

When she came to see me afterwards, she said that I would need a total abdominal hysterectomy, and removal of both tubes and ovaries. A couple of days later she sent a letter to my GP repeating the above information, and also stating that I would need a stent and a colorectal surgeon staring by too.

I was a bit scared by all this, but I felt that if this was what was required to alleviate my symptoms then I was prepared for that. I was asked back into the same surgeon's clinic yesterday to discuss this.

When I arrived, I was seen by a registrar instead who didn't seem that familiar with my case at all. He informed me that my surgeon had injured her shoulder and wouldn't be doing any surgery until January! I expressed my concern, as I was really hoping that I would be treated. He said that he would try to pass the case onto someone else for them to take on and I would hear from them in due course but he wasn't sure due to the complex nature of the surgery.

I was really upset at the prospect of having to wait even longer in my present state. I look and fee about 6 months pregnant, am in near constant pelvis pain and am exhausted after all these years - I'm sure that lots of you know how that feels!

Anyway, he then said that in the meantime I could have a Prostap injection, which may help with trying to shrink the mass which he said was endo. I had it there and then without really having time to think.

I have now read up a bit more on this treatment, and I'm not sure I like the sound of it it all. Woke up from a restless night with a horrible foggy head too. I'm due to have another injection in a month, when I really hoped that I'd be having the surgery by then.

I'm at my wits end, with many symptoms... Can't really do very much and feel very low with all this going on. I really feel that if the original consultant who did the failed surgery said I need a hysterectomy then that is what should be being put in place. Not being fobbed off again which is what it feels like.

I'm so sorry that this is so long! I just thought it might do me good to write my story down, in the hope that some of you may have had similar experiences, or even just to share your story with me.

Thank you so much. X

2

Hi Apple

You got some strength and stoicism to have made it 7 years, woman! But enough is enough, especially now that you've got facts.

Can you contact the surgeon who did the ablation, immediately, and explain that you need a new surgeon, etc. I think given that the 1st one wanted a colorectal surgeon standing by means that your surgery needs to happen now and that the 1st surgeon who wrote such clear conscientious notes will be your ally.

Should that fail, take those notes/instructions back to whomever referred you to the 1st surgeon. Don't let anybody make you wait long periods of time to see someone or at least have a phone chat. If you stop passing gas & BMs for 3 days, take those notes to an ER/casualty, but a real hospital not one of these fake free-standing things we have now. Ditto should you pass blood rectally, more than one might with hemorrhoids and it would probably be much darker blood. Ditto if you feel like someone is applying knives to your back, regardless of whether it feels like they're on the inside or outside.

I say these things because they would've been said by that 1st surgeon had s/he known that your hysterectomy wasn't happening soon. They can be indications of intestinal blockage or tears in the intestine, or of endo bleeding in/through the intestine. I am not a doctor but I had a total hysterectomy at 27 then had endo return at 54 and lost a section of colon then. Anyone who's had part of their gut removed has to pay attention to these issues lest there be a future problem. (Almost 8 years out I haven't had one, but I pay attention.)

Also if you get diarrhea for 5-6 days (less if it's severe), go to the ER.

Stay as calm as you can, remember that we're here for you, and get in there and politely demand another surgeon.

3

Thank you for your reply. I think you're right. I need to contact to original surgeon. Surely she wouldn't have recommended all that if I didn't need it?

I will wait until I get the copy of the GP letter with the notes about this latest visit etc and see what that says. Then I'll get in touch.

I am definitely keeping and eye on the bowel symptoms too. I'm sorry you had to go through what you did. I hope that you're okay now. I'm 42 so not as young as you were by far, but I've been having the endo sympathies for a long time. Just wish that women were taken more seriously.

4

*Symptoms! Not sympathies.

5

Works either way, Apple! I do feel you should get that call in to the 1st surgeon rather than wait for some other report. Yes, I am certain that you need some surgery as that recommendation was clear. Unless one needs emergency surgery - and everyone surgeon prefers a clean, controlled situation to any emergency abdominal surgery - all this takes time. It's possible to be working both options at the same time, wait for that report while also getting a call or appointment set with the 1st surgeon.

I'm being a little pushy here and I apologize. I too wish we women got listened to more attentively about our aches and pains. I can't speak to the injection, hadn't been invented back when I had my 1st go round. No one medical had a clue that my 2d go round could be endo until the path report came in. As far as we know 8'm

6

Ha! As far as we know I'm fine now on the endo.

7

Thanks for your replies. Still no report yet, and this morning I had blood and mucus in my stool and it was extremely painful.

Will see what I can find out today. 😟

8

Let us know what happens.

9

Let us know what happens.