Hi Ladies! I have been reading the info on this site on endo for awhile now (thank goodness this site exists!).
Sorry but this may be long as it is coming from years of pent up frustration...
My history with endo started soon after a m/c at 8 weeks in '03. At the time i didnt know what it was or what was happening so assumed that the pain and cycle irregularities were normal. in '04 things got really bad and during a routine papsmear with my GP she noticed that my cervix was badly 'damaged' (her words!), so i went back to my OB/GYN and after a quick look he diagnosed me with endo - and told me that i most likely would not be able to conceive naturally.
the only options i was given was a lap (which he told me could increase my risk of infertility - no thanks!) or to go through 6 months of menopause (as a 21 year old the thought freaked me out too much). so basically asking if there were any other options he said the best i could do was to check out the endo assoc. website and maybe follow their diet guidelines. i did this for 2 years. eventually though things got so bad that i couldnt walk when mid-cycle came around, i would bleed all through my cycle and during AF i would pass out and be sick. in oct '06 i decided enough was enough when, on holiday in italy i passed out in the street, totally unexpectedly, and had to be carried home by my DH! how embarrassing!
It freaked him out so much that he contacted a friend of his who is a specialist in homeopathy and is also a OB/GYN. after 3 hours of exhaustive questioning on my entire family medical history (she even asked if my Mum was sick during her pregnancy with me!) she diagnosed me with a 'weak' uterus and explained that the m/c created a build up that mixed my hormones. i am not sure if she was right, but, she prescribed me some pretty hardcore homeopathic treatment and within one month i had a normal cycle (yay!) and by the next month i was pregnant with our daughter (even bigger yay as we had been trying for almost 2 years!!).
the only problem is that since her birth things were travelling fine until AF arrived and now as i sit here my mid-cycle is kicking in and i can barely move! i thought that the pg might have fixed things up! or is this just an urban myth?! i am really frustrated ATM, so sorry for the vent! is there any permanent relief for endo sufferers?
Welcome to BB Cassius
Have you sought a second opinion from someone else? It might be worth looking into, especially if you are having pain again.
I had painful periods through my teenage years, and even after seeing a gyno, he told me that even though I had symptoms and family history, it wasn't possible for me to have it at 16 as you don't get it till you are 25! Load of BS it all was.
After TTC #2 for over 5 years, we sought some answers last year, with a different gyno/fertility specialist. I was booked in for a lap to see what was going on and was finally diagnosed with endo, and a blocked tube, which they couldn't unblock. We were told that IVF was our only option, but before we could do that I had to spend 3 months on Synarel, shutting my cycles down.
I'm not sure why you were told having a lap would likely increase your chances of infertility? I have read numerous amounts of times how after having a lap the following 6 months or so are the best to fall pregnant. Something to do with tickling the hairs in the tubes and giving them a little wake up. (one of the theories i read)
After my DD was born and AF returned, they were regular, and painfree. I would probably have 1 or 2 cycles a year that hurt, but nothing like they did before DD. I would just take a couple of panadol, as opposed to being on prescription painkillers before my pregnancy with DD. It was only in the last 12-18 months that they slowly started playing up again.
I have to rush off now, will come back a little later to see what they other girls say and possibly PM you
Hi Ladies
Just popping in to see how everyone is.
Nic when you were on the Synarel did you find you got nose bleeds after the 3 months(when you have a cold/hayfever and sneezing alot).
I went through so many treatments for my endo its not funny. I through the towel in when I was told the next option was a hormone that would lower my voice, give me hair on the face and chest etc.
I was not as lucky as you Nic as after both my births my AF came back and gradualy got worse.
These days I just control the pain with a routine (of pain killers) that I have worked out for myself.
As far as I know there is no permanent way to get rid of the pain. I have been told that even after having a hyserectomy and endo lazered that you can still have the pain. This is because all endo is not visable to the naked eye and can be missed by the Dr doing the lazering. So I guess the only thing that could help is Menopause .
Clare what pain killers are you taking?? What have you tried with no success ??? As everyone is different and there could be something out there that may help you.
Hi Ladies! ( I tried to post this earlier but for some reason it didnt work...so here it goes!)
Thank you so much for your feedback! It can be pretty lonely road having endo as not too many people are aware just how consuming it can be!
Nic: I have just moved to Melbourne so I will need to find a new gyno. My OB/GYN who delivered my DD in canberra was fantastic, but unfortunately he didnt know anyone to recommend down here, so the search begins!!
Fancy a Dr believing that endo is age discriminatory!! we get told so much BS as women that it's just not funny sometimes! (like the midwife who told me that have a pethidine injection would help me sleep through most of my labour!! fat chance of that happening!).
I'm not sure why my gyno at the time told me that it could increase my chances of infertility. I believed him and on my own decision decided not to go ahead, as he had also just told me that even without it (the Lap) i will most likely only be able to conceive with IVF. At the time, I was more worried about fertility issues than pain issues as i felt that I could control the pain on my own...lol!
Chris: I guess with the pain relief I was just self-medicating. I had somehow convinced myself that I was exaggerating the pain (even though at times I would have to pull the car over to the side of the road to sit it out!!), so I would take some anti-inflamm pain killers when it got too bad to deal with on my own.
It wasn't until I started passing out from the pain that DH decided he had seen enough and booked me in to see the Dr who specialised in homeopathy (we were in Italy at the time and had no access to conventional doctors). She prescribed me some treatments that didnt help with the pain, but with the endo itself. I was amazed at the result, by my 2nd AF I had my first 'normal' cycle in years! and yeah, as i mentioned in my last post I was pregnant 2 months later. Since then I have not taken any measures as AF only arrived 2 cycles ago and it was only this mid-cycle that I began experiencing really bad pain again. I took some panadol, but as you girls probably know it was like a drop in the ocean!! lol!
so back to square one I guess...and yeah, if you have any tips or recommendations on what can help, I am most willing to take it ALL on board!!
sorry for taking so long to reply girls.
Chris - I can't recall having nose bleeds, but I only did about 3 and a half to 4 months on the synarel. I did start it in the middle of winter, and did manage to get a cold as well. I went to the chemist and they checked out what I could have for my stuffy blocked nose and gave me yet something else to sniff lol.
Clare, have you noticed if there are any foods that make AF worse? I noticed that whenever I had a coffee or coke, and sometimes even chocolate, my AF was worse. It was only for the first couple of days though, about day 3 I could have a coffee again.
Hope you can find some answers about your pain returning.
Yeah sorry for the late replies...hectic times with work and bub! (no complaints tho!)
Hi Nic, yeah i find that if i have coffee, chocolate etc in the days leading up to and during AF the symptoms are MUCH worse. this is also the case during mid-cycle. that's interesting that you have the same thing. it must be a trigger of some sort. Maybe the caffeine...
Nic/Cassius - I also found that eating anything sugary/fatty made my endo symptoms/cycles much much worse. I worked this out from when I had my lap I completely went off crap food and ate really blandly, simple veggies/wholegrains/meat etc and AF was great, then when I started adding sugary/fatty foods back into my diet, the endo pain started to slowly come back.
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