endometriosis

[teresa]

for those of you with diagnosed endometriosis can you please tell me your symptoms

here is a back ground of me:
I got AF when I was 12. originally it wasn't painful but after a few months it started getting painful. always irregular.
anyway since having DS I am finding AF is super heavy with large clots each month. also the pain is unbearable at times and I am still very irregular.
anyway since sunday I have had awful cramping with today being the worst. I am still a few days off from AF. its to the point I am doubling over and almost in tears. I have had to take nurofen plus just to try and help it but to be honest I am finding even that nots working each month anymore.
i think its time to go to the docs and demand action since no one since has ever wanted to deal with it before. even the gyno i saw in march was not interested.

anyway thanks for listening.

[JLeigh29]

Symptoms differ between people and depending on location of the endo. My main ones were severe AF pain, nausea, vomiting, bowel pain, lower back ache and irregular, long periods.

Took me years to get my lap (the only definitive way to diagnose endo) too...not that my health providers weren't interested, they just didn't know for sure and wanted to rule out other causes, and try other treatments before I had surgery. Ask again for something to be done.

[*Nikki*]

I was diagnosed with severe endo a few years ago.(a lot of my organs where stuck together from the endo).. I had absolutely no symptoms ... No pain ...nothing...
Definitely go get your pain checked out tho... I didn't have to wait long at all to get a lap done

Good luck

[juniper76]

Based on what you're describing, I think it's worth you at least consulting a GYN who specialises in endo. You really want someone who knows a lot about it because A) they'll have the best experience to know whether it's worth doing a lap to investigate based on your symptoms, and B) they'll be the best surgeons to do that lap.

I had extremely painful periods (doubled over in pain for 3 days each month and over-the-counter pain meds did absolutely zero to ease that pain) and for 10 years I had Drs tell me my pain was "normal". It wasn't until I saw a GYN who specialises in endo that anyone took me seriously - he immediately booked me in for the surgery and found severe endo. I also always had diarrhoea during AF and it turns out that was due to the endo covering half of my bowel - it has done so much damage that I was told I will need a bowel resection one day (long, painful recovery). The endo had also encased one of my ovaries and is likely the cause of my DOR (diminished ovarian reserve).

[teresa]

thank you so much ladies for your reply.

juniper - wow! no wonder you were in so much pain. I don't know if there are any gyn's here in this town that specialises in endo but I have been in so much pain for the past 4 days that i have been taking huge amounts of pain relief. will make an appointment next week and speak to my GP about my options. i am hoping she will listen and want to do something about it. i have been told my whole life that pain is just normal with every AF but this is just to the point its unbearable especially with the huge clots and the super heavy bleeding.

thank you so much ladies. its very much appreciated xx

[nothing2lose]

I find neurofen plus totally useless. You should get a script for something stronger like panadeine forte or endone.
I have adenomyosis and endo. I'm seeing a specialist next week to discuss a lap. Unfortunately though, the only cure for adenomyosis is a hysterectomy

[juniper76]

I also had (and still have) the very heavy AFs, although my pain has been much less since my last lap.

If there's no-one close by, it would be worth travelling (to Sydney or Melbourne) for the right Dr. I have a friend down in Canberra who had a lap and their surgeon couldn't remove the endo (too extensive for that surgeon), so she ended up going to Sydney for a repeat lap with an expert endo surgeon. When you've got someone removing tissue in such delicate areas, you really do want the best you can afford.

I hope you have success with your GP. Maybe do your best to make it clear how much pain your experiencing. I don't think I ever really got that message across and maybe that's why I was ignored? Maybe if I'd gone seeking prescription pain meds they'd have taken me seriously, but I was too scared of being turned away empty-handed...


N2L, I once tried panadeine forte (had some left over from something else), but it was as useless as the rest. I think I'd have had to go pretty hard-core with the prescription meds to get any relief (pre-lap)... Heat packs used to take the edge off though...

[teresa]

I found panadeine forte useless with my pain and nurofen plus is just starting to not cut it anymore. like you juniper I found the heat packs helped a little.

thank you so much ladies.

[nothing2lose]

You need to combine different drugs with the PF as a base (under supervision of doctor or pharmacist). I combine it with a NSAID or calmative.

[JLeigh29]

The only thing that worked for me was Tramadol - it got me to work and through the day without being doubled over. Heat packs helped a little.

My gynae said my endo was too extensive for him to be able to do and referred me to one of the best in the country - they actually did my surgery together. The specialist had a waiting list of over 6 months, but my gynae got me in earlier. The specialist told me it was the second worst case he'd seen in someone my age. So yep, go the best you can afford (we actually spent our first home deposit as we didn't have private health insurance, but don't regret it for a second), and do it sooner rather than later.

[nothing2lose]

I have a bad reaction to tramadol. I can't take it.