04 April, 2006

The Smell Of Copper, The Taste Of Pain

Men. Squeamish Women. Family Members. You may wish to skip this post.




Aunt B. has blogged her period. I don't like to talk about my period, so I don't really quite know why I've decided to blog it.

Except I do. Quite simply, my period is the ghost of blood that is destroying my life.

I first menstruated in February, a few days after Valentine's Day and a few weeks before I turned nine years old. The pain started when I was in Jr. High. Most people thought I was faking the pain. And the vomiting. And the headaches that blinded me. The pain never went away. In my late 20s my doctors began prescribing Vicodin for the pain. On January 27, 2005 I had laproscopic surgery. That is the only way to definitively diagnose my disease. I have severe endometriosis.

What is that? Quite simply, the lining of your uterus doesn't stay in your uterus. Instead it grows wherever it chooses inside your body. It can grow on the outside of the uterus, or like me, it can move to your lungs, your kidney, your ureter and your bowel. In my case the adhesions contribute to the frequent formation of kidney stones--another painful ailment.

There is no cure for this disease. You learn to live with it. You learn to devour medical journals for promises of gene therapy. You learn to carefully watch a calendar for planning any activity. You learn to politely avoid meetings that take place on any one of six days each month. If you're lucky you can start a freelance business where you don't have to leave the house on those days. If you're blessed you have a spouse who understands and will go through the Walgreen's drive-thru for your narcotics.

It's not all bad, though. It teaches me patience where I didn't have any. It teaches me understanding for other types of pain. It teaches me appreciation for the people who study these things and try to find cures. It teaches me gratitude for those around me who lift me up in prayer, help me up the stairs to the television, make me laugh.

Why haven't I had a hysterectomy? Well, because I don't believe in drastic measures. Not to mention the fact that endometriosis returns in as many as 40% of women who have had total hysterectomies to combat the disease. Some people have endo like other people have brown eyes. It's just a quirk of your body.

Most women are fully functional during the days of their period. Menstruation isn't automatically a debilitating deformity. I despise it when people think women are automatically limited by their cycle. Most aren't. Those that are usually have a disease--just like some people have diabetes or a club foot.


IF you are a woman reading this, please have a laproscopy as soon as possible if you have more than three of the following symptoms:

--Pain during ovulation, intercourse or menstruation
--Nausea during menstruation
--Migraines prior to menstruation
--Diarrhea during or immediately after your period
--Abdominal bloating prior to or immediately following your period
--Radiant pain to your genitals, buttocks or thighs during your period
--Infertility
--Frequent Bladder Infection

There are several treatment options, both drug-related and surgical that can relieve your symptoms.

I'll be glad to answer any questions you may have.

13 Comments:

At 12:21 AM, April 05, 2006, Blogger Ivy, the Great and Powerful said...

What an excellent post. I had to send a link to my friend Heather. She, too, has endo, and it reminded me so much of convos I've had with her about it.

 
At 5:22 AM, April 05, 2006, Blogger Heather said...

Kat, I'm sorry. I wouldn't wish this on anyone. Your story is eerily like mine, I was nine and the pain started at twelve. I found a doctor in my early twenties, ten years after the pain started. who ablated everything, told me to put college on hold and try to get pregnant, if I wanted kids.

Have you had any luck with Cox II inhibitors (Vioxx or Celebrex)? I know the huge scare, but after researching, that was a concern with daily, not occasional use. Vioxx was my miracle drug, Celebrex isn't nearly as effective, but I find it more useful than narcotics.

I'm on suppressive therapy until I wean Mark, but I can feel it lurking. I'm fairly sure it's also in the joints of my legs (hips, knees, and ankles).

I've had some luck with dietary changes, as well. If you ever need to talk about any of this, I'm around.

 
At 8:09 AM, April 05, 2006, Blogger dolphin said...

I wonder if that might be what my sister has. She currently takes birth control though she's not sexualy active (that I know of) to make it through beause otherwise her cramps literally cripple her to the point she can't get out of bed.

 
At 8:14 AM, April 05, 2006, Blogger Kat Coble said...

Hi, Heather! I've seen you comment over at Ivy's place from time to time.

I tried Vioxx for awhile, but still for me the best luck I have is with a cocktail of Vicodin & Aleve. (Yes, another "risky" painkiller).

Because of the bowel endo I've had to largely forego red meat. I've also had a lot of luck staying away from dairy for the three weeks post-ovulation and during my period.

What type of suppressive therapy are you doing? I'd looked at Lupron, but for various reasons have decided against it.

 
At 8:15 AM, April 05, 2006, Blogger Kat Coble said...

Dolphin,

It sounds like it's probably exactly what your sister has. BCPs act as suppressive therapy by curbing hormones.

 
At 9:31 AM, April 05, 2006, Blogger Heather said...

Kat,

I have noticed the most improvement by cutting out white flour. Now, this may be attributed to overall diet improvement, but having a high fiber (oatmeal + flax seeds) seems to keep the diarrhea and low back pain at bay. ::knocking on wood::

Currently, I'm on Micronor a progesterone only BC, as I'm breastfeeding. I take the BC continuously with no break for menses. BF alone does not stop my period, but in conjuction with the pill, it has temporarily ceased. The endo may be building, so it is a calculated risk, but providing Mark with the best start I can is worth it.

After my reaction to Depo (moron doctor gave me a second dose two weeks after the first and like an idiot I took it). I will not do Lupron. I had spent the day at the ER in terrible pain, being told I had an ectopic pregnancy (not true) but they decided my right ovary was producing follicles even on the depo. Through my own research & later laproscopy I found what I had was an endometrioma in my right ovary.

I think what I'll do is join the bandwagon and post my own experience to my blog, instead of clogging up your comments, further. I'll include what has helped and what hasn't.

 
At 6:09 PM, April 10, 2006, Blogger Elena said...

Kat,

I'm glad I read this. I have several of the symptoms you listed but not all. My doc has me on Mobic for the pain. Depending on which ovary is active that month, I may be more nauseated than usual. I also have great fatigue the first couple of days. When I've missed work for illness, it's usually been menses related.

Being a type 1 diabetic doesn't help either.

 
At 10:14 AM, May 08, 2006, Anonymous Anonymous said...

I know this post is more than a month old, but it was recently suggested to me by my OBGYN that I could have Endo or PCOS, and I've been browsing Google for information on Endo. Specifically, if there are any doctors in the Fort Wayne area who specialize in diagnosing and treating Endo. I've been put back on birth control pills, which is the only thing that seems to help with the horrible pain I've experienced for years and thought was "normal."

It's been very difficult to find any information about such doctors in the Fort Wayne area, and I'm afraid to go back to my own GYN and ask them to be a little more proactive about my psuedo-diagnosis. It's next to impossible to get an appointment there -- if I hadn't agreed to see a Nurse Practitioner (whom I liked a great deal) I would've been forced to wait until September to see my own doctor. Do you have any suggestions and/or advice? Thanks in advance.

I like your blog, by the way. I hope you don't mind if I link to it. :)

Marci.

 
At 10:44 AM, May 08, 2006, Blogger Kat Coble said...

Marci--
Of course I don't mind if you link here. I'd love to read yours, too.

I'm not in Fort Wayne any more. I moved to Nashville about 15 years ago. The only doctor in the Fort I still know is my uncle. And he's the coroner.
I know that Endo pain can make you feel like you were dying, but I don't think you need the Allen Co. Coroner just yet. ;=)

Diagnosing endo is something that most OBGYNs should be able to do. You can't confirm the diagnosis without a laproscopic surgery. It's an outpatient procedure, and is minimally invasive--but it's still surgery.

Once you have a confirmed endo diagnosis, your doctor should be cooperating with you on pain management. Many people with Endo have better luck seeing either an endocrinologist and a pain management specialist.

Regardless, if you are not happy with your OBGYN find another one. Endo is a chronic condition that requires you to be able to partner with your doctor.

Please feel free to email me at
k dot coble at comcast dot net.

 
At 10:36 PM, May 08, 2006, Anonymous Anonymous said...

hey guys use progesterone cream

 
At 3:44 AM, September 13, 2006, Anonymous Anonymous said...

Refer to Diabetes for
useful information

 
At 9:31 PM, April 26, 2007, Blogger Sorcerya said...

I stumbled on your post when I was researching my own pains and can understand how you feel except I have been told my pain is not due to endo, which is fine but does not help me with my debilitating period. I have since taken a recommendation and am now on birth control and it has greatly minimized many of my problems, but not all of them.
Thanks so much for your story and I think more women should also talk about this more openly without a stigma behind it.

 
At 2:08 AM, March 20, 2010, Blogger hannah said...

I never go to my doctor anymore asking for pain killers prescription and then be turned down at the end, all I do is order online from www.medsheaven.com hassle free and low cost, they have three pain killers listed on their website which are ultram tramadol celebrex that you buy, and the best part is no prescription required!!!

 

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