Thursday, November 19, 2009

Endometriosis Pain in All Its Glory

Ass-throb Day seems to be gleefully missing in action this month! This literal pain-in-the-ass (compliments of endometriosis) almost always happens on CD10 for me, but it's already the end of CD11, and there's no sign of my rectum transforming magically into a nuclear reactor for the day. This is goooood!

So something in Traditional Chinese Medicine is working for me somehow. I really don't understand how all the herbs and acupuncture work exactly, but I am thankful that the pain that has besieged much of my life is slowly diminishing. I am a realist though. I don't expect all the adhesions that have been forming over the years of my life to disappear nor this endo pain to vanish completely. For example, due to a change in my diet, I was a bit constipated yesterday (sorry-too much information!) and my bowel movements caused pain in my uterus. The pain felt like period cramps that lasted some 15-20 minutes, even though I wasn't having my period. Now, what does taking a dump have anything to do with the uterus? The only logical explanation I can think of is that endometriosis has somehow glued my uterus and colon together, and movements in either effect anything that is joined to it. This is unfortunately the kind of shit (pardon the pun) that endometriosis sufferers have to deal with much of the time. But thankfully incidences like that have also diminished over time for me since I began TCM.

I used to dread going to the toilet when I had periods. As if the killer pain of endo/AF wasn't bad enough, peeing and crapping was a BIG ORDEAL every single time! They were always accompanied by excruciating pain that is 1000% worse than what you started off with. The experience is just simply ridiculous! Can you imagine wanting to pooop so badly but you're holding back while pooping (and menstruating) because it's causing you such immense pain! So do you keep it in or get it out? What a stupid dilemma! I would often be clinging on to the walls or bathroom countertop infront of me with tears streaming down my eyes while I did it. Pooping scared me to death each time! And that's not a joke! Yes, a simple call of nature turns diabolical when you have endometriosis. But I am so thankful that this is no longer a torturous routine with my periods now.

I wish I could say the same for sex too. Yes, endometriosis is really unforgiving--It is determined to make every part of your life a misery. Having pain during sex is another ordeal that many endometriosis sufferers have to endure. Pain? What? Where? How? I remember the days pouring over Dr. Google to find answers, but ended up just as clueless. There are so many conditions that result in pain in so many different parts of the vajayjay! Even real-life doctors in the flesh do not give you details as to what the pain feels like and where. For the sake of many new endo sufferers out there looking for clues, I want to share my story so you don't feel so confused and alone out there.

For me, the pain didn't appear overnight but it was something that intensified over the years. I would get it once in a while, and then every other month, and then it was every month, and then it was every time I had sex. The simple act of arousal can send waves of pain surging through the uterus-maybe the ute is engorged with blood and expanding causing the adhesions to stretch and pull and hence the pain- I really don't know. But it sure sucks! Deep penetration that involves (to eloquently put it) banging of the cervix can sometimes send sharp pain up the uterus.  The worst thing about endo is that it is an attention-seeking whore that wants to take the limelight from the big O, as in orgasm, and it wants to climax together with the Big O! OOOOOOOOOO My Gawd! The contractions from an orgasm causes intense pain like killer period cramps! It happens simultaneously. It's like the pooping thing all over again-you wanna go there but you don't. When it happens it is the most intense pleasure and pain all at the same time! It is amazingly wonderful but you're in agony cos your ute is cramping and it feels like it's a burning hell in there! And the pain can last for 15 minutes to an hour long after the pleasure is gone. I've even felt lingering pain that lasted for a whole day. Yes, it fucking sucks!(pardon the pun again)  It's not something that allows for close intimate bonding after the deed! I feel terribly mean and guilty for letting DH see me squirming in pain when I know that all he wanted was to give me joy. So--They say that sex can be mind-blowing (ute-blowing too). With endo, I really feel like I've gone to heaven, and then died!

Thankfully for me, this pain diminishes each time I have sex within the same cycle (yes, I guess you can say sex is good for me!) The only logical explanation I have for what's happening to me is that during the orgasmic contractions, the adhesions stretch like the muscles and ligaments in your body. Once they're looser, they cause less pain--That's until they grow taut and tight again after a break, like when AF visits. First time sex in a new cycle after AF always scares me to death too. Hmm, yes, I guess I can at least pretend to be a virgin all over again!

I hope by sharing some of my experiences here, people can understand a bit more about why endo girls always complain about pain, and what a big deal it is. We're not just whiny bitches who have nothing else better to do. It is a terribly debilitating disease. Meds don't always help. Sometimes they cause additional pain by irritating and inflaming the stomach lining. Instead of eliminating pain, they just add to your endless list of pain. I am one of those who chooses to deal with one less pain. So I looked for alternative treatments else where.

I have gone against the grain of western medicine-I have said no surgeries, excisions, and Lupron and all sorts of hormonal drugs that has crazy side-effects. People may think I am loopy, but I am actually getting better. I think I will always have pain as long as the adhesions are still there, but thankfully, TCM has helped me manage the pain, making my life more pain-free now. I really feel for all the women suffering from chronic endo pain. I just wish more endo girls had the help that I got--that's a 100 million endo-inflicted women worldwide! That's a whole lot of pain gone! Now wouldn't that just be great!

4 comments:

Rachel said...

Thanks for the thoughtful comment you left on my blog.
I haven’t seen a better description of endo pain anywhere. I like the openness and tell it as it is attitude. I should make my husband read this so he can understand , it seems I am not explaining it well 
Anyway, I am glad the TCM is working for you. I have the "infertility Cure" book which I bought about a year ago. I have been doing acupuncture for two years on and off but only 1-2 times a month and I haven't gone recently. It helped me some but what helped me the most was gluten free diet.
I have been looking around for another TCM doctor since mine doesn't specialize in infertility. I feel weird going to any TCM doctor; do you know anyone in the Washington DC area?

Nic said...

All the pain you have described is the same for me. I am going in for my 3rd lap on tues and hope this works for me. If not alternative medicine maybe the way forward.
Wish we didnt have to suffer so much. Well done for explaining so well!

zengirl said...

Thank you all for responding and sharing your thoughts here. I thought that by writing about my endo pain here, I could help some people out there, but it turns out that you've helped me a great deal instead-it's a great consolation knowing that you can all understand and identify with this horrible pain. Thank you for letting me know that I am not alone-and I don't need to feel like such freak!

Rachel--It's wonderful that the gluten-free diet has helped you. I tried that but unfortunately, it drove me crazy and depressed because I love food! I'm not that strict wit the diet but I try to abstain from it as much as possible. I'm sorry I don't know any TCM doc around Washington DC. I was very lost too, not knowing where to turn to and I took a chance with one that I found on the internet. I was very, very sceptical, but I'm still with him one year on, and thankfully he's the real deal and not some internet conman! Since you know about Infertility Cure, I would suggest you go to their website
http://www.thefertilesoul.com/
go to treatments and look under local clinics to see if there is one near you. They say that if you can't see one in your area you can email them so that they can help you find one. This would be a good place to start. Good luck! I really hope you will find someone who can help you!

And to anyone who has not tried TCM, please know that there IS an alternative that you can try. It is less invasive, has less risk, has almost no side-effects and usually costs less. Sometimes all we endo gals really want is a choice! Good luck!

Unknown said...

Um sorry but what is tcm my endometriosis is horrible I have excruciating pain everyday of my life not only with my period I've tried all the bc methods doesn't work makes it worse