Let's Talk Endometriosis
Here's a warning for the boys, and faint of heart, in the room. This post talks blood, guts and girly parts. The reason being March is National Endometriosis Month, not to mention, this topic is near and dear to me. Not only do I have endo [mildly], my sister has it [massively].
Do you know what endometriosis is? Most people know it's related to women parts and their periods, but few understand that it is actually when the lining of your uterus - the stuff that puffs up when the hormones of your period kick into gear - endo is when that lining grows *outside* your uterus. Thus, it flares up more during that time of the month, but can be painful during other times of the month, too. And the places this lining grows can be really inconvenient, like on your nether regions, making things like, um, potty time incredibly difficult.
It's gross, it's painful, it's prevalent, it's misunderstood and it's underfunded.
Luckily for me, I was able to control my endo with a hormone-based IUD. Sure, I have gained some weight, but I don't roll around on the floor in pain every month anymore either. And if you remember from above, I have endo mildly.
My sister, who has it massively, has endured multiple surgeries, test and after test and no real answers except yanking her uterus out. Not an option for her because she wants more children.
Clearly *I* don't have the answers. I just wanted to talk about it. And maybe you want to talk about it too. I would love to hear your stories if you have them. If not, maybe you will think about and/or understand endomitriosis a little better. Hopefully.
Endometriosis on Wikipedia
Endometriosis Association
Endometriosis Research Center
Do you know what endometriosis is? Most people know it's related to women parts and their periods, but few understand that it is actually when the lining of your uterus - the stuff that puffs up when the hormones of your period kick into gear - endo is when that lining grows *outside* your uterus. Thus, it flares up more during that time of the month, but can be painful during other times of the month, too. And the places this lining grows can be really inconvenient, like on your nether regions, making things like, um, potty time incredibly difficult.
It's gross, it's painful, it's prevalent, it's misunderstood and it's underfunded.
Luckily for me, I was able to control my endo with a hormone-based IUD. Sure, I have gained some weight, but I don't roll around on the floor in pain every month anymore either. And if you remember from above, I have endo mildly.
My sister, who has it massively, has endured multiple surgeries, test and after test and no real answers except yanking her uterus out. Not an option for her because she wants more children.
Clearly *I* don't have the answers. I just wanted to talk about it. And maybe you want to talk about it too. I would love to hear your stories if you have them. If not, maybe you will think about and/or understand endomitriosis a little better. Hopefully.
Endometriosis on Wikipedia
Endometriosis Association
Endometriosis Research Center
13 Comments:
My best friend had it very badly. They tried medications, surgery, and even tried getting her pregnant. Her and her husband desperately wanted a baby. The doctors said being pregnant would help the endo as well. They did fertility treatments and the whole shebang. She did not end up getting pregnant, and at the age of 28, had to have a hysterectomy. There wasn't much choice, the endo was taking over her whole abdominal cavity.
There is a happy ending though, she now has a beautiful daughter through adoption.
Another friend of mine has this. She's 33 and worried about her time to have children or if she can. I'm glad you found something that helps you with it.
I was lucky enough after three laser surgeries, and some magical mildly weight gaining pills, to be reduced to mild symptoms. Which I will totally take since we have no idea for how long it will last. Thankfully the medical world is starting to do more research into female reproductive issues. The future is looking bright.
I had no idea thats what this was. Sounds horrible.
I sincerely hope she can have another baby.
Thank you Aimee for posting about this - it is soooo misunderstood, misdiagnosed and underfunded! And it's soooo mysterious in the way it presents and behaves.
I feel for your sis, trying to hold onto her uterus - I'd be the same way. While it is unkown what specifically my paticular issue is (I've been told I have endo, adnomyosis and growth of scar tissue all over the place - much of it removed this winter), I can relate...totally.
I'm glad you found something to help with the pain, as it is indescribable, even in mild form. I cannot imagine what your sis has to go through. :( So big hugs to you and her...from someone who gets it.
ugh, that is soooo gross! you guys have it hard.
I may not have it but it sounds very bad. I hope all women who suffer from this will get well. Thanks for sharing this informative post.
I’ve been diagnosed with endometriosis as well, had laparoscopy last November, but they couldn’t get it all as it is likely it is in my uterus as well. Not quite 33 years old and married, my hubby wants us to try and have a baby before other options are pursued. I’m tired a lot, feel bad most of the time, and have spasms in my uterus and back. I also noticed a direct link with pain and diet for me. I’m a big meat eater and love beef. However, the more beef I eat, the worse I feel. That is, until I switched to organic, hormone-free beef. I did some reading online and learned that xenoestrogen is injected into a lot of the beef readily available (most grocery stores and most restaurants as well). Thank goodness to have a Trader Joe’s nearby. For the past month, I’ve only eaten organic beef and the pain as well as the spasms have lessened for me. Just thought I’d share in case there are any other beef lovers out there who are also having this problem.
Sam, and others - thank you so much for sharing your stories.
Hi all, I'm probably the eldest here, 48 :-) Been suffering all my life...mostly undiagnosed with endometriosis...infertility, what I thought were bladder infections, and also what I thought was IBS. I have endo on almost every organ in my pelvic cavity, a total of 27 surgeries, mostly for adhesions (caused by endo) and for multiple tubal pregnancies, c-section, ovary removal and femoral hernias. I feel as though I have lived with this for the past 34 years. I have found that switching to all organic meats, shampoos/creams, and applying 20mg of Progesterone cream 22 of the 28 days a month on my abdomen have helped save my life....literally. It’s funny how we can forget how it is to feel good for more then 5 – 7 days…and that’s at 50% capacity. I recently decided to go to a ND that was going to test my hormones because I decided that I wanted to supplement instead of going through a miserable menopause….I thought that’s what I should expect because my younger years were always so miserable: constant constipation, or IBS, back pain, constant abdominal pain, bladder irritation (felt like I had a bladder infection,) or had to go to urinate and very little came out…., bloating, weight gain, crampy, sharp stabbing pains in the rectum and vagina, agitation with outbursts, impatience, heavy periods that seemed to last forever….this is what I can remember, however, I would have almost 1 week a month where I felt pretty good….until I started to rub the progesterone cream on every night, sometimes twice if I was really miserable. To be continued...
continuation: I started to feel “normal” again, and forgot about what I had gone through until I recently stopped to obtain accurate hormone tests from my sputum…I stopped the cream for a month and after about six or seven days I felt like I had a bladder infection (this is where the bad memory comes in, I should have known)….had some antibiotics in the house so took them, but there was only 5 so I needed to go to the doc to get some more…and this was about a week after I stopped taking them, no bladder infection or blood in urine was present, I kept thinking that it was because I had already taken the five tablets….the doc said no, it would have returned by day 3…she was right. This bladder irritation lasted the complete 4 weeks…along with debilitating back pain, constipation and general abdominal cramping. This testing process was to take approx. 8 weeks, one month off of my progesterone and then the cycle starts and on day 2 I’m to spit into a vial every other day for 22 days while taking my temp each morning….I lasted the four weeks and just couldn’t tolerate the symptoms any longer…so started reapplying the cream, ALL of my symptoms have been alleviated by this cream, grinding 2 tablespoons of flax seeds into a powder and mixing it with a cup of water and drinking each day (for constipation and great omega 3’s,) exercising, and reducing (not eliminating) fat/dairy, increasing protein. It works for me, thankfully. I was operated on by Dr. Reich….that surgery gave me approx. 2 years of alleviation, he ablated and had a special technique to prevent adhesion reoccurrence, or so he says. Two years later….symptoms were back, I went to another well known doctor, Dr. Kanayama in NYC who was only interested in the money, a month before my scheduled surgery they called and asked for a “deposit” of $18,000, because he was an out of network Dr. and they didn’t know what my insurance would pay, that was heartless and outrageous and they never mentioned this in my prior appointments. Then I found a local surgeon (in network )who offered excision too, my last excision of endo was 1/08….it lasted a year and that was with the diet change, with the exception of dairy and meat, I’ve primarily eaten organic because they say endo is exacerbated by the added hormones in meats etc., ….I sincerely feel that my problem is a low progesterone level, and not the ratio. Diagnostic blood work and 24 hr. urine have confirmed this, but it was never addressed by my OB/GYN after pregnancy. I only have part of one ovary left. With each of my pregnancies I had to take progesterone suppositories, I had two known miscarriages, one pregnancy was invitro., I have a history of PCOS. I truly hope that this post helps someone; I know what you are going through. I know that it won’t help everyone and that it may not help me forever, but it has given me my life back for now, if anyone has any questions please feel free to email me at: reevesbeach@yahoo.com.
Continuation....for the inflammation and adhesions I take "serrapeptase."
A great endo specialit is right in New York. Dr. kanayama saved my daughters life. I can not express how overwhelmed I feel speaking about this subject. My heart goes out to all of those women suffering from this disease. But there is hope and that comes from the New york Endo Center. Visit Dr. Kanayama ask for Sabrina she will take care of you. You wont be disappointed
Hi all, I am a 32 year old from Barbados who suffers from Endo. I can safely say that I can relate to anyone who speaks of excruciating pain. Unlike some women though I do not get heavy periods and am quite thin especially from all the work my womb does during my period with the contractions. I have now started taking Borage Oil capsules and Bromelain, with a drastic change in my diet and that seems to have helped alot. My diet now consists of mainly fruits and veggies, NO wheat or gluten products, dairy, caffeine, food additives, alcohol, meats (only fish),no snacks, flour products, sugar, table salt (only Celtic sea salt). Other than less pain my energy level is soaring, I feel great most days.
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