Help!! My Gynacologist says she can't help me anymore and is sending me to a special chronic pelvic doctor.

[Catt23]

Hey all,

I get the worst chronic pelvic pain everyday that lasts for 6-12 hours straight.

I had a laparoscopy last year and apparently all my endometriosis was removed (this was by a different Gynacologist). She didn't tell me about any of the results from my biopsy or the surgery. Then she didn't care that i got pain and bleeding everyday months and months still after surgery.

I went to a new and much nicer Gynacologist who actually wanted to help get rid of the pain. However, she didn't know how my surgery went or anything because i had no clue and the old Gynacologist would not send the results over, even after we sent numerous letters, we got no response.

She thought i may have nerve pain and tried me on numerous nerve pain medications, which unfortunately had no affect. Also, extra hormones to help get rid of the bleeding and pain. It's lowered the everyday bleeding a bit but the pain is actually slowly getting worse.

My mum has rang the new Gynacologists office up multiple times, trying to get me in sooner because the pain has been unbearable. My family and friends keep trying to get me to go to hospital when i'm in so much pain. However, i refuse to because i have endone and the same drugs they have and they don't even help the pain at all.

The Gynacologist finally rang us back and said she just wont be able to help me and she is really sorry. She has referred me to a special chronic pelvic pain doctor who she thinks will be better help.

But I have recently been getting new symptoms such as pain and cramps in the bowels (which i did not have before). So this makes me think that i still have endometriosis and it has spread. A chronic pain doctor doesn't actually specialise in endometriosis so I don't know if that will help.

Lastly, people have told me i shouldn't see her because i am only 19 and i will probably have to take medication for the chronic pain for the rest of my life.

[Hidden]

Are you being seen at a bsge centre or by general gynae?

[Catt23 in reply to Hidden]

I haven't heard of a bsge centre because i'm in australia. Not sure what that is to be honest.

So just a general Gynacologist

[Marcia71 in reply to Catt23]

Bsge are British society of gynaecology and endoscopy and specialised endo centres here in U.K.

Even when I went to them I got referred on for pelvic pain first and when that did nothing I persuaded endo specialist to do a lap. Even though I'd had a hysterectomy there was still a lot of endo to be removed and it had stuck organs together. So try the pelvic pain but if you get no relief get to an endo specialist. Hopefully there is a endo Australia that can help 😊

[DBuckland]

It's not a bad thing that your doctor is sending you to a chronic pelvic pain specialist. In my late 20's I was referred to one as I'd been suffering with that type of pain. It became clear that I suffered from a pelvic floor disorder. I had chronic tightening of my pelvic floor muscles. I had my first treatment... O MY LORD...prepare yourself. BUT that being said, that treatment changed my life. I had treatments for about 2 years; until I became pregnant with my first son. Now That I'm looking at an endo diagnosis, I've been researching, and endo can affect your pelvic floor. Doesn't mean you have endo on your pelvic floor, but the two are closely connected. Go, take the referral and good luck.

[Catt23 in reply to DBuckland]

Thank you!

I do go to a pelvic floor physio who says my pelvic floor muscles are well, so i'm not sure if that is the case for me.

What was the treatment? x

[Charlie-36 in reply to DBuckland]

Hi Dbuckland, I hope you don't mind me asking but what pelvic floor treatments did you have that were successful? I've been seeing a pelvic floor physio for a year but nothing has helped, only thing I've got from it is the deep breathing..

[DBuckland in reply to Charlie-36]

I am not sure the actual name of treatment...other than just to call in "injections". Sorry if it's TMI, but doc goes in thru vagina up to pelvic floor with this long narrow instrument that has a syringe 💉 inside. He finds the muscles that are restricted, triggers them to spasm and then administers the "solution" that numbs the spasm and caused muscle to relax. My doctor was Richard Henry at the Kingston chronic pain clinic.

[Charlie-36 in reply to DBuckland]

Thank you for replying 😊are the injections Botox? I've heard of these being used for pelvic floor spasm.. you must of been really brave to have that done it sounds very intrusive! But soo worth it if it actually worked for you, did they want you to use dialaters too?

[DBuckland in reply to Charlie-36]

The solution may very well be botox. Yes, it was painful and while in that table it was all I could do to just breath. Doc's lucky he didn't get a foot in the face lol,,,but I'm so glad I did it. The difference was like night and day. Good luck 😊

[DBuckland in reply to DBuckland]

No, Ive never used a dialator.

[Charlie-36 in reply to DBuckland]

Oh okay thanks for that, my physio is all for the dilators but It just gave me a terrible pain flare and no better after..so seemed pointless

[Charlie-36 in reply to DBuckland]

That is amazing it worked for you, its definitely something for me to consider. Thankyou 😊

[DBuckland in reply to Charlie-36]

Your welcome. Good luck

[Jacjess]

Hi, where in Australia are you?

I'd be really interested to hear who

You've been referred to for chronic pelvic pain... there are many gynaes that specialise in endo. Let me know if you need some recommendations (I'm

In Sydney).

[Catt23 in reply to Jacjess]

Hi, i'm in Adelaide!

Yeah i'm just concerned because i've been to Gynacologists who specialise in Endo and they can't help me. The thing is i still think i have endo so i feel like they should be able to help me better than anyone.

[Jacjess]

For what it's worth, I was diagnosed with endo about 9 years ago, had a laparoscopy and it was removed. Fast forward to now, i had another lap 5 weeks ago for suspected endo, but no endo. They found a lot of fluid behind my uterus, but no endo. I am still in a lot of pain, so now starting a tricyclic antidepressant to help manage the pain. It's probably worth seeing the pain specialist and see what they say. Surely if they think endo they can refer you to another gynae? Anyway, I guess I'm saying it may not be endo. I have most of the symptoms, but no endo.