Brigitte: Are you sure it’s just cramps?
Ginger: Just so you know…the words “just” and “cramps,” they don’t go together.
From the film Ginger Snaps
This is something I had never, NEVER, done before.
I have a condition called endometriosis. (WARNING – description of female biology coming!) Basically, the stuff that comes out during a woman’s period doesn’t all come out…because some of it is growing where it shouldn’t. I’ll provide a link, should you wish to get really squirmy.
It’s hard to say how long I’ve had it, but from the time I started telling a doctor “This isn’t normal,” to a diagnosis took FOUR YEARS.
I’ve had oral birth control, painkillers, and surgery to stop the pain. Each one worked for a while, and then either my body developed a tolerance, or the tissue grew back. In 2010, I had an IUD put in by a gynecologist (I’ve already said this onstage, so online, whatever) which sends contraceptive right to the source of the problem. I’ve been normal for three and half years. But since February this year, the pain has been getting steadily worse. Again.
A week ago tonight, I was at the Citadel Theatre Young Company’s play readings. Brand new playwrights having their work read, out loud, in public, for the first time. And ten minutes into the second play, I had the icy thought –
I’m going to break in half and throw up on the floor.
I had to leave. I had NEVER before left a show, reading, concert, ANYTHING, ever – whether the show was terrible or not, because it’s a horrendous thing to do. It disturbs the audience, it makes the creators involved feel like garbage. I e-mailed two friends later who were there, and who I knew saw me leave, and I just said “I was really sick.”
“Sick” isn’t the word. It’s a consistent grinding in the abdomen. You need your abdomen to walk, to sit, to stand, to pick things up. Before I had the IUD, I was dragging myself to work, because I HAD to work, and then going straight home. Every night. For months. There’ve been two shows I was desperate to see this past week, and now they’ve closed and I didn’t see them because I was terrified I would have to leave. Again. My life is being screwed up by this. Again.
I’m seeing my gynecologist on Thursday, to find out what else I can do. The final thing to try on endometriosis is a hysterectomy. THAT is not happening. But…I am turning 40 this year…
There are so many ways being a woman sucks.
No woman should have to suffer as you do. Endometriosis affects between 1 in 10 and 1 in 8 women worldwide. The cause is unknown and there is no cure.
As common and serious as Endo can be there is a lack of specialists with the skill to treat the disease effectively. REAL Endo specialists will not prescribe Lupron (a chemotherapy drug), or hysterectomy to treat Endometriosis. It has been found in men and infants.
For more information:
http://centerforendo.com/endoq&a.htm
Sadly, many patients are becoming more informed on Endometriosis care and women’s health than most medical professionals. It is important to become empowered with knowledge and find your way to a skilled Endo expert. Of over 50,000 gyns in North America less than 100 can effectively treat Endometriosis and only a handful exist across Canada.
Thanks so much. Since I found a gynecologist who figured out what I had, things have been much better. I have confidence in the advice I’ll get Thursday. My big fear now is that I’ve got another stumbling block between me and having kids. I refuse to give up on that.
I also had a reply from @hystersisters, saying that a hysterectomy doesn’t always work anyway: that fact, and that it can appear in men and babies, is mindboggling. If that’s true, and at least 1 in 10 women will get this disorder, why on earth doesn’t endometriosis get more attention?
As long as your specialist is an Endo doctor. There are three in Alberta identified by peers and patients and only two appear on the international patient referral lists. Nearly every gyn will say they have the skill, but the sad truth is that few do. Even still they don’t have the skill level of the top specialists in the world. I am having excision in Calgary next week with one of the top specialists. To take a chance on a lesser skilled doctor puts you at risk for greater complications in the future and can make it more difficult for our local Endo specialists to treat.
There are numerous reasons why access to effective care is so difficult and awareness is so elusive even in Alberta. I’m hoping to change that and to build collaboration for a better future. I’m not asking for much. Just a revolution.
If you have any questions about information or how to find an effective Endo specialist please feel free to contact me. There is also support with women locally living with Endo. It can be a devastating disease.
Big hugs
Also, excision surgery with a skilled Endo specialist can significantly improve your chances for natural conception even with stage 4 Endometriosis the statistics can improve up to 60%. You shouldn’t have to choose between quality of life and motherhood. Ablation is not the same as excision and most gyns will not have the skill for successful long term results.
I hope this helps
Your experience just sounds so difficult, and bloody unfair. I understand as much as I can do being someone in another body lavished with endo!
Please try not to be down on yourself. Also, do not believe a hysterectomy cures endo. I have found the most amazing consultant (UK based) and on his website he explains why this is: http://www.endometriosis-consultant.co.uk
All the very best and a big hug, Emma x
Thank you so much 😀