Help & Advice?

[jakodai]

Hi All,

I've been 'lurking' on and off on this forum for a while now, and I've been hesitating as to whether or not I should post here, because I'm not pregnant, I don't have children, and I'm not trying to conceive, either. HOWEVER, I think I may have endometriosis, and this seems to be the best forum that covers this topic that I've been able to find.

Basically, I've had painful periods for as long as I can remember, painful as in 'curled up on the loungeroom floor in front of the heater' painful. While they aren't THAT painful these days, they are still quite bad. When I was 19 I had an appointment with a nurse at a local health centre and she suggested that it may be endometrosis and gave me a referral to another doctor. I got home that night and researched it and got scared about the laposcrapy and tried to push the whole thing out of my mind. Since then, my periods have become almost unbearable. Up until recently I was on the pill and I'd go for several months without taking the break, or the sugar pills, so I didn't have to have a period. Not a good thing, I know. I've been off the pill for the past few months because my doctor wanted to see if that was causing my problems. Basically, this is what I've found.

• Migraines - just before my period starts, maybe a week or so.
• Lower back pain - again, about a week or so before my period starts
• Irregular periods - my last one was a week late
• Depression / mood swings
• Thrush-like-symptoms
• Painful sex
• VERY Painful to go to the toilet - it feels like my insides are being sucked out (doing 1's or 2's - sorry for the 'too much info')

I've been to so many doctor's / nurse's (at the women's hospital in Melbourne) and have been poked & proded, for what seemed to be a really bad case of thrush, and while suggestions have been made that it may be this, no tests have been done. It was only recently that I made the connection myself (the whole 'incident' that happened when I was 19 has been really pushed to the back of mind, and only recently surfaced).

Now I don't know what to do. How do I get this tested? I found the Women's hospital in Melbourne to be totally useless, and really don't want to go back there. The whole time I was there (I had a few visits) I didn't see a doctor, just nurses and a sexual counsellor. The nurse diagnosed me with Vulvadynia and put my on anti-depressants, which did NOTHING at all. I did research on the topic, and I didn't think that's what I had, it didn't make sense and certainly didn't answer all the problems that I'm having. Whenever I spoke to them about it, it felt like they weren't listening.

Anyway, I'm writing an essay here...

Basically, my question is, what do I do from here? Where can I go? I'm in Melbourne...

I would REALLY appreciate any advice!

[mehza786]

a gynocologist privately, would be the best place but you may need a referral from your Doctor for it.

and he may poke and prod you a little but it would be to feel your stomach for inflamation and tensions. you may also get an internal ultrasound which is uncomfortable but then at least you can see what is going on.

i'm still on the public waiting list and i've been hospitalised for pain many times and have had three operations and a lot of hormone therapy. I dont think this issue is high on the priority list for public hospital.

Private is more costly but worth the quick intervention and help.

Endo can cause a lot of pain even in bowels and bladder movement, especially if it is located on the outside of the uterus.
basically if its outside then there may be inflamation and as the bowel and bladder are close they may have trouble sliding past each other and/or it could have spread to either of them as well.

i'd suggest changing your diet as well...especially with gluten...it helps.

[nic]

Hi jakodai welcome to BB, you'll find loads of support here
Have you checked the ECCA (Endometriosis Care Centre of Australia) website out?
If you google for it, it should be the first one that comes up.

They have a section on there for you to find a specialist, which might be helpful?
Goodluck, hope you can find someone who will take your concerns seriously

Nic

[jakodai]

Just out of curiosity, are there gynecologists that specialise in endometriosis? Basically, will any gynecologist be able to test / diagnose / etc endometriosis? I have an appointment with a gynecologist next week (private) and I'd like to know if it 's something that will need to referred to someone else?

[joel's girl]

Just out of curiosity, are there gynecologists that specialise in endometriosis? Basically, will any gynecologist be able to test / diagnose / etc endometriosis? I have an appointment with a gynecologist next week (private) and I'd like to know if it 's something that will need to referred to someone else?

The specialists on the ECCA site have a special interest in endo so I agree with nic wholeheartedly about seeing someone who is associated with them.

Other gynies may use a old 'traditional' technique of removing the endo which is not as good and only gives temporary relief, also in my experience a standard gynie won't necessarily have the experience to look further (bowel etc) - they just seem to scratch the surface IYKWIM.

Yes some procedures can be scary but this is such a hideous disease and it truly cannot be ignored. I know I tried for years and years too do exactly that.

I wish you all the very best jakodai, please keep us update, you'll find that we are a pretty good support network here.

[jakodai]

Thanks for the support everyone!

Can the ECCA help, even though I haven't been diagnosed, I'm just assuming here... Mind you, it has been mentioned by a few different doctor's / practioner's, so I'm not drawing my own conclusions.

Joel's Girl - that's what I'm really worried about. Apparently the gyno I'm seeing is in her 60's, and while I'm not 'ageist' and I'm sure she's great at what she does, I can'thelp but worry that maybe she hasn't kept up to date with the latest developments, you know what I mean? I always do my best to relax, and not stir the pot, but I've done that for the last 18+ months and it's gotten me nowhere. I think it's time to be assertive... kind of... lol

[joel's girl]

IMO a ECCA specialist is more likely to diagnosed endo correctly the first time.

I had 4 laps over 5 years before I was diagonsed

[jakodai]

oooh, that doesn't sound nice at all... I thought I was bad having gone for 18 months without an answer.

[joel's girl]

Are you in NSW Jakodai ? The specialist I saw in the end was fanastic. I've referred a few girls onto him (and was referred from a member here myself) and we all have had great results. His bed side manner is impeccable as well. Such a nice guy. Understand how hideous this disease is and empathises accordingly.

PM if you are in NSW and I can pass on the info if you like. He is listed on the ECCA website as well.

[jakodai]

I'm in Victoria. I'm going to see my GP this week and get a referral for the ECCA Dr listed on their site.

Thanks for you all your help everyone!

[Aimz]

Hey hun,

I had many of the same symptoms - the most prominent one being painful sex and cramping throughout the month. I was diagnosed with a bad case of thrush too and given an ointment and told to try that for three months. Well it didn't work so I went to see a different gynaecologist when I noticed I was getting sharp pains on my left ovary and a "twitching" feeling down there. He has referred me for a laparoscopy and hysteroscopy as well as dye studies on 21st November. He is 99% sure it is endometriosis. A laparoscopy is the only way they can test for endo, unless you suspect there is some on your ovaries in which case it may show up on an u/sound.

I also get pain when going to the toilet - the GYN said it is most likely "adhesions" which are part of endometriosis which literally stick to your bowel or bladder which is why is can be painful.

Go and visit a gynaecologist and take a list of your symptoms with you. I'm scared about the lap too but I know it will give me some definite answers and a treatment plan.

Good luck and let us know how you go

[jakodai]

I hope this doesn't come across the wrong way, but it kind of makes me feel better that other people have the same symptoms as me, because it reassures me that I'm not imagining it.

Best of luck amysarah, I hope everything gets sorted!

[Aimz]

Of course it doesn't come across the wrong way! Its a great comfort when you can talk to people who know what you are going through. I'm another one of those not pregnant, no kids, not TTC (yet) people and I absolutely love this site.

If it wasn't for the ladies here at BB I would have just put my symptoms down to "no big deal" when it turns out it is a VERY big deal. I went and got checked out and now I'm on the path to get some answers. The best thing we can do is understand our bodies so we notice any changes and it helps to have a "sounding board" which is what BB is for me.

I hope you stick around - you'll get addicted!!

I hope you get some answers soon.

[Cassius2]

Hi there Jakodai,

Great that you found BB!! i have found it really awesome to have the girls here give support and be able to give support back. the thing with endo is that many specialists just dont give priority to the disease (as your example at the women's was testament to). they must just not understand that a disease that renders us almost useless for days and days on end, with immense pain (i mentioned on here recently that the pain i experience...and am sure most sufferers have...is on par with very advanced labour (transition) and that is saying something!), dizziness, passing out, vomiting, etc etc is just not on.

I am so stoked that you found someone with an interest in this condition. they will most likely do an internal ultrasound to see if they can pick anything up. they may also do some prodding around your abdomen etc and they may ask you some hairy questions about what happens during sex (ie pain and where) etc.

i also recommend checking out the endo australia association website for tips on how to modify diet. i found that cutting back on the caffeine and alcohol around the time of ovulation and AF to be really really good in lessening the extent of pain.

anyway, wishing you the best of luck and hope you get some answers!

Clare