Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi all,
I havn't been around much and I apologise, I've had a year most wouldn't think possible. I thought I best check in and see how you all are and let you in on how I am going. I see there are lots of new joiners, welcome!
For the new joiners, I'm Taters (Tate) I live in Australia and I've been a member of DS since 2007 =)
I joined this forum in 2009 after many tears and by then 10 years of no idea of what's going on with my body. I started my period at 9 and my mother (a nurse) has still to this day never seen anything like it. I won't go into gruesome details, but not pretty let me say that! By the time I was 19, and my boyfriend fearful my periods might kill me, I knew I had to get help. It sounds dramatic but my pulse plummets with my period, at times it seems non existent.
To speed this up, I had 4 surgeries in 14 months, Stage IV endometriosis - all those hormones did not help one bit =/ =(
So, this year has been hellish.
I did an illignacane (sp?) infusion (numbing agent) alongside a magnesium infusion, when that didn't work, we stuck needles in my back to try and numb my nerves, nope that didn't work either. So we sent me off based on my pain specialists orders to another pain specialist for a pelvic nerve stimulator. By this time, I'm a hop step and a jump from morphine patches and methadone.
But hang on... backtrack slightly, did I mention on top of this I found out both my ovaries and polycystic and my adenomyosis is growing badly?
So, I go to the new pain specialist, we decide to place in the nerve stimulator, which is a pacemaker, electrolodes are placed into my spine and the pacemaker into my bum cheek.
This involved a 2 separate stays in hospital - and it has helped somewhat, but the pain is very much there.
However, I needed surgery #5 for Endometriosis, my adenomyosis is growing despite the mirena and the pill, my uterus and ovaries needed to be excised again.
So where am I?
At the end of my road, I am going to try and stick it out for 2-3 years, and we will try for a baby (with help), however if I can't I will need to have a total hysterectomy, I am currently 22.
I do not need the lecture on what it will do to me, What this disease has taken from me is far worse. I am so cut up now it's not funny, I am still in pain, and I am losing the battle fast in regards to fertility. The only solution now for my adenomyosis is a hysterectomy.
I see my specialist on December 18th and we will discuss options etc.
SO, that's me...I think that's all =/
How is everyone!? please let me know how you're all going!!!
On the plus side, 1 more year of my degree!!!!
I am also a proud new aunty =) I will post a picture up!
xoxoxo
I havn't been around much and I apologise, I've had a year most wouldn't think possible. I thought I best check in and see how you all are and let you in on how I am going. I see there are lots of new joiners, welcome!
For the new joiners, I'm Taters (Tate) I live in Australia and I've been a member of DS since 2007 =)
I joined this forum in 2009 after many tears and by then 10 years of no idea of what's going on with my body. I started my period at 9 and my mother (a nurse) has still to this day never seen anything like it. I won't go into gruesome details, but not pretty let me say that! By the time I was 19, and my boyfriend fearful my periods might kill me, I knew I had to get help. It sounds dramatic but my pulse plummets with my period, at times it seems non existent.
To speed this up, I had 4 surgeries in 14 months, Stage IV endometriosis - all those hormones did not help one bit =/ =(
So, this year has been hellish.
I did an illignacane (sp?) infusion (numbing agent) alongside a magnesium infusion, when that didn't work, we stuck needles in my back to try and numb my nerves, nope that didn't work either. So we sent me off based on my pain specialists orders to another pain specialist for a pelvic nerve stimulator. By this time, I'm a hop step and a jump from morphine patches and methadone.
But hang on... backtrack slightly, did I mention on top of this I found out both my ovaries and polycystic and my adenomyosis is growing badly?
So, I go to the new pain specialist, we decide to place in the nerve stimulator, which is a pacemaker, electrolodes are placed into my spine and the pacemaker into my bum cheek.
This involved a 2 separate stays in hospital - and it has helped somewhat, but the pain is very much there.
However, I needed surgery #5 for Endometriosis, my adenomyosis is growing despite the mirena and the pill, my uterus and ovaries needed to be excised again.
So where am I?
At the end of my road, I am going to try and stick it out for 2-3 years, and we will try for a baby (with help), however if I can't I will need to have a total hysterectomy, I am currently 22.
I do not need the lecture on what it will do to me, What this disease has taken from me is far worse. I am so cut up now it's not funny, I am still in pain, and I am losing the battle fast in regards to fertility. The only solution now for my adenomyosis is a hysterectomy.
I see my specialist on December 18th and we will discuss options etc.
SO, that's me...I think that's all =/
How is everyone!? please let me know how you're all going!!!
On the plus side, 1 more year of my degree!!!!
I am also a proud new aunty =) I will post a picture up!
xoxoxo
You have been on quite the journey - my mom is considering a nerve stimulator (for a back injury, not endo) so it is nice to hear that it at least helped somewhat.
I'll be wishing you the best with your upcoming appointment and TTC plans! And if it comes to the hyst - hope for a speedy recovery and pain relief. For the bad rep they get I know a few ladies who had great results, especially when you add in adenomyosis.
We call my niece taters, too :-)
Wow! That really is...unbelievable! I'm still pretty new here, but thank you for sharing your story. Before I was officially diagnosed, when I was desperately seeking confirmation I had endo and looking for more info, all my searches kept leading me back to DS. So eventually I just started looking here for answers. I remember reading about the Ketamine(?) infusions way back when, and I was so hopeful you would get some relief. I'm so sorry to hear it didn't help. I can't imagine going through ALL of that and still having pain! I've got ten years on you, and I haven't been through NEARLY as much, so I am not trying to compare our situations, but I can relate to a lot of your story.
I am kind of in the same boat with fertility. I was told I had adenomyosis long before I was diagnosed with endo, and hysterectomy seems to be the only solution for me, too (I don't need the lecture either). I'm told I'm not a good candidate for a de-bulking surgery because the adeno is diffuse and pervasive, but I may still explore that option after IF treatments before it's all said and done. I was given the Mirena w/ BCP option as well, but was told it probably would not work well in my case (endo and adeno would still grow, just slower, and I would likely bleed constantly). I opted instead for Lupron in hopes of shrinking my uterus (so far, with good results), so that we can try for a baby with IVF, hopefully sometime in the near future. But I'm pretty much being told not to get my hopes up and to have a Plan B in place. Although I may be able to conceive with help, in my case, I may not be able to carry to term because of the way my uterus is scarred and misshapen. So, I am getting ready for the fight of my life, and I know I still may not win. I'm just telling you this because I imagine it can be difficult for your peers to relate. Please know you are not alone in this struggle.
I hope you found some helpful options to manage the pain at your last appointment.
It's great you're still making progress on your degree. There are some truly amazing women on this site!
I saw the doctor, he said my left ovary is now fused to my urethra and is a complete mess, he said it probably doesn't work now, and if it does it wont for long, his biggest concern for it now is that no endometriomas begin to grow as can cause issues and the fact its fused to my urethra means unattaching it could cause damage to my urethra...
up and down...
Hope your journey is successful! :) goodluck with IVF!
xx