So it's been a long while since I've mentioned this subject. March is Endometriosis Awareness month and as of late is has become more of a topic in my home again. Since some of you don't know my story, I'll start from the beginning but try to keep it brief. As a teenager I always had extreme pain during menstration. By the time I was eighteen the pain occurred more frequently. I finally decided to see the family physician who after just one office visit diagnosed me with Irritable Bowel Syndrome, gave me some steroids and told me to watch certain foods. Well, time goes by, sex is painful. I start taking hot baths almost daily and think a sleeping pad was just the best invention ever made. I thought this was normal. That I was just a wimp. At age 23 William and I decide we want to start our family. A couple of years go by and I decide to see a fertility doc. We do the initial work up. Everything looks ok. After charting my temps for just a couple of months, I was pregnant! At 10 weeks we miscarried. For a long while after that, I did not even want to try. Then one night in 2001 after taking 800mg of ibuprofen I was still in excruciating pain. As the night went on it got worse.....after letting out a couple of jolting screams, William calls 911. I was taking to the emergency room just to be told by the ER Doc that nothing was wrong with me..."You have just started your period." William was HOT! While we were there, they did run some test, by morning the new ER Doc wanted to admit me. I was told I had a large cyst and a high white count. We WALKED out and we to my OBGYN, I was admitted that day and given antibiotics and scheduled for surgery a month later that would tell me that I had Endo stage 4. Right after surgery the pain was present, not as extreme, but there everyday. I was but on so many different hormones and birth control to control the progression. A few years went by, everyday I was taking pain pills and taking it easy because too much physical activity made the pain worse. You felt like everyone thought you were the laziest person. You get tired of people feeling sorry for you and frustrated because they don't understand. In 07' William and I made the decision to travel to the CEC in Atlanta Georgia. And even now I still think it was the right decision. The surgery was suppose to take a couple of hours....try four. It was bad. There were four surgeon's. And they even had to reconstruct my rectum. Without getting into too much I was pain free for a good while for the first time. It was wonderful. Fast forward to now....I am back on pain pills again. I feel like I'm back at the drawing board. Lupron or Surgery. I'm not too keen on Lupron, I didn't do it before and probably want this time. In Atlanta I had a hysterectomy, they left one ovary. I'm not sure if I want to go all the way back there. Although I do believe it's my best chance of being pain free for a while. Always so many decisions. What's my next step? Right now I'm gonna just deal for a while. We'll see what the future holds. For any of you wondering what the CEC is...just click on the link. They were well worth the drive.
Happy Birthday! To My Love
3 hours ago
8 comments:
T n' W,
I just found your endometriosis story. I'm so, so sorry for everything you have been through. It breaks my heart!
One of my personal goals with increasing endometriosis awareness is to prevent women suffering in silence. My symptoms began at 13. I wasn't diagnosed until my first laparoscopic surgery at age 23.
I have had 7 surgeries... 6 laparoscopies and 1 laparotomy.
The laparotomy scared my family because they were in the waiting room wondering what on Earth was taking so long. It took 5.5 hours. They did a full incision. There were 2 doctors. The colorectal surgeon and the highly skilled gynecologist who worked with him often on patients like me. They scheduled the surgery as a "team surgery" to consolidate surgeries for me and get more done at once.
The colorectal surgeon removed a foot of my colon and did a hemicolectomy/bowel resection due to a maltreated colon/paraduodenal hernia that was causing a partial blockage.
The GYN removed endo. While they were in there doing all of this work, they noticed a carcinoid tumor on my appendix. This surgery took place in 1996. No one saw that tumor in my 1994 laparoscopy. So, somehow this tumor known as "slow-growing" had popped out of nowhere in 2 years or less. In any event, they took out my appendix since it had a tumor on it.
I want to thank you from the bottom of my heart for sharing your story!!
The more women step up and share their stories, the more awareness is created! The more awareness is created, the better the odds of preventing or minimizing the "suffering in silence" anymore for ourselves, our fellow endo patients, and the future generations of girls to come.
We can't let another generation live through this "suffering in silence" syndrome. Our voices are being heard. We are making a difference. New patients are finding my blog everyday and they are excited and empowered to be finding information to help them in their journey by doing their own research.
I have seen so much momentum even in the last few DAYS... It is truly amazing. Bloggers are teaming up and working together to promote endometriosis awareness. :)
Even non-endo bloggers are helping us now! On Twitter, we have bloggers who don't have endo that are retweeting our #endo twitter messages (tweets)!
It's really catching on now! (You can see more about the #endo tweets on my 2nd blog video/vlog... if you haven't already).
We are making amazing connections and really getting the word out to more and more people.
The misdiagnosis of IBS is exactly what my recent blog post talked about. I'm not sure if you saw the post about the Prevention magazine article about doctors distinguishing between IBS and endo? It's just the kind of thing you've described. Such a misdiagnosis is all-too-common.
I am so sorry about your miscarriage. I'm really sorry. I can't even imagine.
I've had those ER trips where they look at you like you're crazy or even laugh in your face. It's downright inhumane. One time, my GYN sent me to the ER. I had about 20+ symptoms going on and I was a real mess.
The triage nurse grilled me about what symptoms had brought me to the ER. After explaining to her that I was at the ER because my GYN had sent me (with a written note that I had already handed her), I went through my litany of symptoms.
I saved cramps for near the very end because I know how seriously they are taken! Once I uttered the word "cramps", this nurse literally LAUGHED IN MY FACE! :(
Years later, I found the wonderful, highly skilled doctor who was part of my 1996 "double surgery".
He compared uterine cramps to angina. He explained that the pain of uterine cramps and the pain of a heart attack are very similar because it's a similar type of muscle or something! Finally, a doctor who "gets it"! He actually equated the debilitating cramps that endo patients can get with heart attack pain.
Anyway, ER trips can be demoralizing, stressful, horrible experiences!
I am so, so sorry for everything you have been through. It breaks my heart.
I have been in local (in person) endo support groups since 1992. I started a local endo group where I now live in 2001. I began blogging last June.
I've spoken with, written to, or met in person hundreds of women with endo. Sadly, heartbreaking stories are the norm. It saddens me so much to hear so many stories of suffering, pain, grief, and frustration.
Endometriosis can affect a patients' career, home life, relationships, fertility, pain level, etc. The impact of endo can be profound... not just on the patient but on the patient's loved ones too.
As far as your remaining ovary, do they believe it has a cyst on it? I know you already had a hysterectomy but if they were to take out your remaining ovary, you'll lose your natural hormone supply.
Obviously this is a decision between you and your doctor and is dependent on what exactly is going on with that ovary. I ask these questions because you could be having pain that is not associated with that ovary.
For example, you could have adhesions or you could have endometrial implants elsewhere (besides the ovary). I know of women who have had a hysterectomy, had some period of relief, but then have gone on to have more endo found in various places...
If your ovary is fine and they were to "take it out while they're in there", you'd lose your natural hormone supply and that could open a Pandora's box with the hormone replacement controversy.
(Hormone replacement is not recommended right after endo is removed because the synthetic hormones can feed the implants).
I've heard of women who woke up after hysterectomy with a patch (hormone) on... that they never consented to.
Whether you've already had a hysterectomy or not, I would think the "no hormone replacement for X amount of time" rule would apply if they found ANY endo during a surgery. (You can check with the Endometriosis Association regarding what the "X amount of time" is recommended to be at this point).
You could have adhesions causing the pain. Especially since you had such a complicated surgery... it's possible that surgery-induced adhesions are causing the pain too.
Since you don't live near where you had that surgery, do you have the ability to speak with a doctor there by phone perhaps? I know that might seem like an odd idea but big endo centers like that might just have a means for you to talk with someone to better evaluate your options/plan ahead.
I know you already had a hysterectomy but since you're looking at the possibility of having that remaining ovary removed, you may want to check out this link. I've had local endo support group members find this organization helpful...
HERS Foundation:
http://www.hersfoundation.org/?gclid=CIvRycaFjJkCFQG7Ggod9GstmQ
I don't know if any of this helps but I hope something in here does! I know you're going through a stressful time right now and that these kinds of decisions can be very difficult.
I want to thank you for sharing your story. I am so very proud of all of my endo sisters this week! So many stories are being shared. So much information is being spread! So many people are being helped!
Putting your personal story out there can be nerve-wracking or scary or draining... I know. However, you have done a great service to endo patients and the public by sharing your story publicly like this!
Some "alternative medicine" options you may want to investigate rather than the "drugs and surgery" route almost all MDs will suggest might be:
acupuncture (I LOVE THIS!!!), Chi Nei Tsang (could help adhesions... my friend who had a hyst loves this!), physical therapy for pelvic pain, meditation (seriously, people underestimate meditation but it can do great things), deep breathing relaxation exercises, EFT, progressive muscle relaxation, homeopathy, etc.
I haven't personally tried all of the above but I have tried many of them... with good results!
For example, with all of my illnesses I see 8-9 specialists right now. With no disrespect to any of my other doctors, my acupuncturist has helped me more than the rest of them put together!!
I'm not kidding. He's amazing! (I have to post about acupuncture! I've got a partial post in my drafts)... and NO it doesn't hurt. My acupuncturist uses Japanese-style needles that are VERY thin. It is amazing!!!
I hope things start to look up soon!
I'm thinking of you. Thanks again for the shout-out about my blog. You made my day with that. :)
Jeanne
Endo awareness petition: http://www.gopetition.com/online/22963.html
P.S. Feel free to post the link to the endo awareness petition on your site, if you like. I'm trying to get it posted as widely as possible. The more names we get, the better our odds of media coverage. Anyone supporting the endo cause can sign (male, female, young, old, endo patient, non-endo patient...)
T n' W,
I just posted this tweet to direct some readers to this great post:
Brave endometriosis patient overcomes endometriosis, becomes a mom: Sophie's Stories. Endometriosis Awareness Month. See link! #endo
Jeanne
wow, you have such a heartbreaking story Tonyia! You have definitely been thru tons in the past few years....i cant even begin to imagine the feeling of losing a baby . That has to be one of the hardest things to go thru! You are such an encouraging friend :)
So I have a question for you: after your first surgery, did you have pain that came back? my is coming back, slowly but surely. It's a little bit different this time around, but i'm still taking the continuous birth control. I have my followup appt for the current bc pill i'm using next week and since i'm still having pain (but it's not like the pain before, at least most of it isnt), do you have any ideas?
I'm so sorry that you had to experience all of this pain and struggling and i defintiely am so sorry that you are having pain again :( But dont forget that God lets all things work according to his plan for you . It's going to get better :)
Just found your blog via Jeanne (first commenter on this post).
I too have endo and I too have had miscarriages. We are now in the process of adoption.
I'm so sorry for the loss of your baby and all you have gone through.
Thank you for sharing your story.
thanks for sharing all that info with me :) ummm...well, lets just say that i am an endo researcher junkie lol.....i used to do more of it in the months leading up to my surgery, however with school this semester and working it's been kinda hectic just to do those..... I have a great doc that i love, her name is Dr. Neilsen. She is the best doc that i could ask for! she isnt a specialist or anything, but for right now she's the best option that i have :) She is really great with explaining things and letting me pick the option of which therapy to choose, which is such a blessing! She told me on my last visit that she could tell that I have done a lot of research...haha, i just smiled :) So do you know of any specialists in nc, or someone who is more familiar with endo? I have researched the CEC right much too, they seem like wonderful and competent doctors.
By the way, how is Sophie doing?
Such a painful history (physical and emotional!). So sorry! Hope you find the cure to your pain!
Alyson
Thank you so much for sharing your story and opening our eyes to endo awareness. I have had many friends deal with this and it is painful to watch them deal with it. I pray for a miracle and the pain to STOP!
I hear your pain, felt a lot of it, too.
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