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Endo Girls
the ongoing saga of bloody pain
Seeking support 
8th-Aug-2012 05:48 pm

I am writing seeking some support. I was diagnosed with PCOS in October of last year, and after having increasing pain, was also diagnosed with endometriosis and myofascial pain syndrome in March of this year. I was scheduled to have my first lap on August 17, and then three weeks before my surgery date (last Monday) I ended up in the ER with shortness of breath and chest pain. Come to find out, the birth control that the doctors had me on to help control the PCOS and endo had caused three blood clots in my lungs. They told me I was very lucky to survive! After a brief hospital stay, I have been at home resting for the last week or so, and am allowed to gradually return to work over the next several weeks.

However, my surgery has now been postponed for at least six months due to the blood thinners I am now on. So... at least six more months of endo pain for me! I have been trying to work through all of this as best as possible, but I fear that some days it has gotten the best of me. Many of my loved ones have also said that they feel these illnesses have gotten the best of me. I'm hoping for some support from others coping with this similar illness, and some advice on how you've worked through the disease. I am still in my first year of dealing with the diagnosis, though pain started about a year ago. 

I'm always trying to be positive, but when my surgery got postponed another six months, I was pretty bummed that I wouldn't have some sort of relief in the near future. I take regular pain meds to help with the endo, and they usually help, but I hate being "knocked out" on pain meds all the time just to function. I have gone on a small dose of antidepressants to also help me get through this tough time. They have helped some, but I still find myself struggling often with knowing that I can beat these problems.

Any advice on how you've approached this disease and are trying to beat it are so greatly appreciated.

8th-Aug-2012 10:57 pm (UTC)
Oh honey I'm so sorry! This is such a hard disease to live with--and nobody "outside" of the illness seems to understand what it's like to have this kind of pain.

My story's not great--I haven't had much luck in getting rid of all the pain for good. But I've found ways to live my life around the pain. I can't work full-time outside my home any more, but I found a job that lets me work from home full-time. (I'm a writer; I work for a high tech company.)

One thing I did that's really helped me is I got a referral to a pain management clinic. While they can't and don't do anything that can cure endo, they are able to try a variety of things to help fight the chronic pain. They can do things like nerve block injections, physical therapy, and even acupuncture. (I live in California.) The pain clinic has really helped me diminish the pain little by little.

I also did several years of therapy/counseling with a psychologist who specialized in chronic pain patients. That *really* helped me to get better at living with the reality of chronic illnesses that can't be cured, learning to deal with people who don't get it, learning how to explain my situation to friends & family & coworkers, etc.

I hope you're able to find some help! I also wonder if you would qualify for one of the class-action lawsuits that are currently underway for birth control pills that cause blood clots. I know that sounds greedy, but a savings account can be a really helpful thing to have when you've got endo. (I lived on mine during a period when I was too sick to work.)

Good luck & I hope you're having a pain-minimal day!
9th-Aug-2012 06:52 am (UTC)
I am so sorry to hear about the scare you had and now the wait for some relief.

I have never managed to have the pain go away permanently but I watch my diet carefully- eat very clean no processed foods and limit non organic meat, limit carbs and lots of greens and juicing/smoothies. Diet has helped ALOT. I also do a lot of supplements that help with inflammation in the body, herbs and homeopathy and found that acupuncture helps as well.
This is about trying different things, researching and finding what works for you.
It's still not a cure but it can be managed. I had 10 years of pain so bad I basically stayed home and did not work and now I am fully functioning, work full time and deal with "Episodes"
I wish you all the best.
9th-Aug-2012 06:32 pm (UTC)
"Many of my loved ones have also said that they feel these illnesses have gotten the best of me."
Unless I've misunderstood this bit, it sounds as if these loved ones have no idea what Endo is like. Being in pain, at the intensity and duration we can experience just takes over sometimes.

If your doctor is waiting for the lap before prescribing drugs to help reduce the endo symptoms, couldn't you check with them if its safe to take one of these now?

I hope you find something useful in the links.
9th-Aug-2012 06:34 pm (UTC)
I tried to post but some info for you it was 'marked as spam'
hopefully it will get Ok'd!
9th-Aug-2012 09:37 pm (UTC)
Thanks so much for all of the wonderful support and feedback, I really appreciate it!

I'm definitely grateful to have a boss that has been super understanding thus far when dealing with all of the time I have had to miss because of episodes and flare-ups.

The pain management clinic is something I've considered trying, and it's great to hear that the psychologist worked as well - I'd definitely be interested in trying that out. In terms of diet, I went mostly vegetarian when I was diagnosed with the PCOS to try and stave off the associated diabetes and heart disease, and get some of the weight off. I've really enjoyed this diet, but would love to hear about any anti-inflammatory supplements or foods you've found that work well. I have to watch my vitamin K-rich (mostly leafy greens) foods and supplements while on blood thinners for the next six months, but I'm willing to try a whole slew of different things to feel better.

I'm definitely going to look into the current class action lawsuits that are going on, just to see if it's something worth pursuing. It'd be nice to have something to show for all of this pain and suffering and near fatality, that's for sure! I'm also going to do some more research on the Gnrh, haven't heard of those before. I'm not sure whether or not they'd be willing to let me try these after the blood clotting bcp issues, but it could be worth a shot - thanks for bringing it up!

Everyone around me has been really supportive, they just can't understand dealing with a chronic pain issue and the drain it can have on your mood. It's nice to be in a community where others can understand exactly what that feeling is like without having to try and explain!

Edited at 2012-08-09 09:42 pm (UTC)
10th-Apr-2013 07:07 pm (UTC)
Have you seen the book “Dying to Be Well” by Carolyn Marie? She almost died from Endometriosis and is now sharing her story to help others from falling into similar predicaments. You can go to her website to check out her story and gain more insights: HealingNRG.org.
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