New to the boards....a long story..sorry...

[Guest guest]

Hi everyone

I only recently joined the board, after searching for months for an

online support community like this one. I am so glad I found it,

although the large amount of emails blew me away, to say the least.

I am 34 and live in Australia. I found out last June during a lap

to find the cause of my pelvic pain and flooding, that I had

endometriosis, enlarged cystic ovaries (not PCOS), severe pelvic

congestion, a retroverted uterus (i knew this already) and a small

fibroid that was nothing to worry about.

He put me on medroxyprogesterone (provera), at 30mg a day for 3

months, to treat the endo. He stated that this could possibly

continue for up too 12 months. At the time, the pain assosiated

with my period was so bad that I was willing to try anything, and

not knowing alot about fibroids, and taking what he stated into

consideration, decided it was nothing.

I started the provera on the 1st of August and within a week started

noticing an incredible dull ache on my lower right side. This ache

came and went during the day. By the end of the month, I was

getting this ache constantly with occasional sharp stabbing pains,

that took my breathe away. I went back to the doc as I thought this

was a bit unusual. He told me after a five minute consult that it

was my appendix and tried to put me in hospital the next day to

remove them. I told him that I dont have any of the symptoms, just

this pain. He didnt even send me for an US or blood tests. He gave

me a script for anti biotics and sent me home. Told me to come back

in 2 weeks if the pain was still the same or worse.

It got alot worse in that week and I ended up in emergency for 4

hours 5 days later, only to be told that it was endometriosis

related and go home. I told them about the lap and the provera, but

they said its obviously not working.

This pain gradually got worse and I noticed that my stomache was

sticking out all the time. I decided to start a pain diary to watch

the patterns and was amazed to see that the pain although always

there got suddenly worse within a half hour of taking the provera.

So with three tablets a day, by the time I went to bed I was in

agony, and stopped sleeping altogether. It was a nightmare. I went

back to my GP and asked for an US to see what was going on in

there.....he refused! I asked him if it was possible that the

provera was the problem and he said no way. He said that there is

nothing wrong with me and to go home.

By the end of October I decided to change GP's. The new GP sent me

for an US as soon as I told her that I had been having this pain

since August. I was told that my uterus was fine and my ovaries

were fine. In frustration I told the person doing the US that the

pain I am having was in a particular spot. It didnt move, had never

changed, but was getting worse. He put the US directly where I held

my finger and stated that I had a large fibroid there!!!!! Amazing

that he just said my uterus was fine!! In comparison to others I

didnt think that my fibroid was that large, at 4.5cm by 2.5cm....but

the gynie said that being slightly more than half the size of my

uterus is large. He was concerned that it had grown from a very

small size to this large size in such a short period of time. He

then told me that fibroids dont cause problems or pain and would not

listen too me. SO I dont plan on going back to him.

Anyway, 3 months down the track I am still in alot of pain. I

decided to stop the provera as soon as I found out that synthetic

hormones can increase the growth of existing fibroids. I am very

worried that the endometriosis is going to be back with a vengence

and I am findng it hard to differenciate between the pains I have

now. I am constantly in pain and although have now been to see

another doctor, who suspected ovarian cancer (all clear), still have

not found anyone that will actually believe that the pain is coming

from the fibroid. A number of theories have been thrown at me, for

instance, torn round ligament, cysts, retroverted uterus pulling on

my ovaries etc etc. No one thinks the fibroid is causing this pain.

After reading all the messages here, I am a little hesitant about

telling you that I would prefer to have a hyst, mainly due to the

fact there are so many things going on in there and this would solve

most of them. Whether to loose my ovaries is still a decision I

need to make, due to the endometriosis side of things.

I am really worried about finding another gynie, due to the lack of

listening skills and actual information that would help me. I dont

want to be negative about this but I am finding it very difficult to

find anyone here in Australia that will do something to stop this

pain. They wont even give me pain killers. I am buying over the

counter nurofen plus. Currently taking about 50 a week!!

I am really lost at the moment and I sure my family is just getting

sick of hearing about my pain all the time.

How long does it take to get someone to take you seriously? How

many doctors do I need to go to before someone will take notice and

do something? It this the same for everyone, or do I just have

really bad luck with doctors?

I dont know what to do next, who to turn too, but I do know that I

cant live with this pain for the next 20 years till I hit menopause.

I know its a long one and turned into a very big moan, but I feel

relieved that there are other women out there that can relate to

what I am feeling and understand how much this is affecting my life.

Hope to try and help someone else in a similar situation one day.

Hugs Suziedee