Thursday, August 20, 2009
1 Year Anniversary of "Living with Endo"
August 16th was my 1 year anniversary of starting this blog, amazing how the time flies. Here is to a painless and surgery-free year for all my endo readers out there. Love ya lots! <3
Endo News Updates
Again... long time. I am sorry. Life has been busy, I have been out of town, working, playing and my big brother got married, what can I say?
Quite a few interesting and new developments have come about recently regarding endo research. Proellex, a "promising" new selective progesterone receptor modulator (SPRM) was undergoing phase II clinical trials for the treatment of endo and fibroids.
http://finance.yahoo.com/news/Repros-Therapeutics-Inc-bw-1930651958.html?x=0&.v=1
The trials were voluntarily suspended due to liver toxicity concerns of trial patients. I wonder when doctors are going to stop trying to mask the symptoms and start actually researching, finding a cause and then find a way to address the cause. You can throw all the cheese you want onto broccoli, but you still have broccoli, it is just covered with cheese. Yes, bad analogy, I know but it is true. BTW, I don't have anything against broccoli. It just is late and I had no other analogy ideas that sort of made sense.
In the UK news today, evidently an endometrial biopsy will detect the presence of nerve fibers specific to having endo.
http://www.dailymail.co.uk/health/article-1207541/Rapid-test-diagnose-common-womb-condition-endometriosis.html
Evidently it is almost 100% accurate (sounds too good to be true, also note that this is based on one small study with only 99 women). If it does prove to be accurate, this could be a great thing for women, an easy way to detect endo, hopefully preventing years of undiagnosed suffering and unnecessary surgeries. I am also a part of the Juneau Biosciences study which is looking for an endo gene to diagnose endo in the future using a very simple blood or saliva test.
How fucking easy would it be to be diagnosed by spitting in a tube? So much better than surgery, just for a diagnosis.
Obviously, surgery still will have a massive role in treating endo, as an immaculate excision removing all visible endo lesions along with a wide margin around the lesions is by far the best and longest lasting treatment option we have. We will still need all out laps, just not for the initial diagnosis.
Quite a few interesting and new developments have come about recently regarding endo research. Proellex, a "promising" new selective progesterone receptor modulator (SPRM) was undergoing phase II clinical trials for the treatment of endo and fibroids.
http://finance.yahoo.com/news/Repros-Therapeutics-Inc-bw-1930651958.html?x=0&.v=1
The trials were voluntarily suspended due to liver toxicity concerns of trial patients. I wonder when doctors are going to stop trying to mask the symptoms and start actually researching, finding a cause and then find a way to address the cause. You can throw all the cheese you want onto broccoli, but you still have broccoli, it is just covered with cheese. Yes, bad analogy, I know but it is true. BTW, I don't have anything against broccoli. It just is late and I had no other analogy ideas that sort of made sense.
In the UK news today, evidently an endometrial biopsy will detect the presence of nerve fibers specific to having endo.
http://www.dailymail.co.uk/health/article-1207541/Rapid-test-diagnose-common-womb-condition-endometriosis.html
Evidently it is almost 100% accurate (sounds too good to be true, also note that this is based on one small study with only 99 women). If it does prove to be accurate, this could be a great thing for women, an easy way to detect endo, hopefully preventing years of undiagnosed suffering and unnecessary surgeries. I am also a part of the Juneau Biosciences study which is looking for an endo gene to diagnose endo in the future using a very simple blood or saliva test.
How fucking easy would it be to be diagnosed by spitting in a tube? So much better than surgery, just for a diagnosis.
Obviously, surgery still will have a massive role in treating endo, as an immaculate excision removing all visible endo lesions along with a wide margin around the lesions is by far the best and longest lasting treatment option we have. We will still need all out laps, just not for the initial diagnosis.
Wednesday, July 1, 2009
Endometriosis Raises Risk of Preterm Birth By 1/3.
It seems that not only are we high risk of having infertility, but we are also at a high risk of having our babies prematurely. A recent Swedish study shows that pregnant women with endometriosis have a one third higher risk of preterm birth of their babies than women without the disease.
http://www.telegraph.co.uk/health/healthnews/5709993/Women-with-common-womb-condition-at-risk-of-having-premature-birth.html
Women with endo are also more likely to suffer other complications of pregnancy and are should be treated as a high risk patient. This is not to say that women with endo cannot have healthy normal pregnancies and babies, just to make sure you and your baby are receiving the best possible care and treatment.
Happy Canada Day to all!
http://www.telegraph.co.uk/health/healthnews/5709993/Women-with-common-womb-condition-at-risk-of-having-premature-birth.html
Women with endo are also more likely to suffer other complications of pregnancy and are should be treated as a high risk patient. This is not to say that women with endo cannot have healthy normal pregnancies and babies, just to make sure you and your baby are receiving the best possible care and treatment.
Happy Canada Day to all!
Sunday, June 14, 2009
New Study Showing Quercetin Reduces Size of Endometriosis Lesions
OK, I know. I have been neglecting this blog a bit lately, but I have been super busy with life. Quercetin is a flavanoid found in apples, red onion and both green and black tea. Apart from its many functions as a natural antihistamine, immune modulator, anti-inflammatory (cox-2 inhibitor), LDL cholesterol reducer, chemoproctectant among other things, it has recently been shown to help significantly shrink endometriosis lesions in rats:
http://www.ncbi.nlm.nih.gov/pubmed/19462895?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
This is such an amazing discovery in safely treating endometriosis symptoms! Yes, Lupron, Danazol, and continuous birth control pills can be effective for some people in managing the pain, but they do have significant side effects and negatively impact the estrogen dominanance situation. Given the choice of Lupron which produces a temporary menopausal state and can cause bone loss or Danazol which can have permanent masculinizing side effects or quercetin to reduce the size (and with quercetin also reducing inflammation and cancer risk), I will take the quercetin!
This is such a great discovery both for palliative endometriosis care but also for the nutrition/naturopathic medical communities, proving safe natural alternatives can be just as effective if not more effective than drugs. Keep up the great work!
http://www.ncbi.nlm.nih.gov/pubmed/19462895?ordinalpos=1&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
This is such an amazing discovery in safely treating endometriosis symptoms! Yes, Lupron, Danazol, and continuous birth control pills can be effective for some people in managing the pain, but they do have significant side effects and negatively impact the estrogen dominanance situation. Given the choice of Lupron which produces a temporary menopausal state and can cause bone loss or Danazol which can have permanent masculinizing side effects or quercetin to reduce the size (and with quercetin also reducing inflammation and cancer risk), I will take the quercetin!
This is such a great discovery both for palliative endometriosis care but also for the nutrition/naturopathic medical communities, proving safe natural alternatives can be just as effective if not more effective than drugs. Keep up the great work!
Thursday, May 7, 2009
Long Overdue Update
Another big delay in updating, I am sorry :( I know. Recovery over the last month has been slow going to say the least. I have been incredibly fatigued and not sleeping well at all. For example I have slept about 8 hours in the past week. Yikes! I have also been having sharp shooting pelvic pains in the morning from about 5am-8am. Yesterday I suddenly had severe cramps for no apparent reason and nearly passed out at a gas station. Yes, the last 6 weeks have been pretty hard on me. I try not to complain and just get on with it, but it is hard. I certainly wasn't expecting to be needing to take Percocet 6 weeks or so post op or prescription sleeping pills just to get a few hours of sleep.
I saw my endo specialist last week, and she said it is normal to experience a lot of fatigue and shooting pains or a while after such a big surgery. She said to keep taking it easy and allow myself to heal. Pushing myself too hard will just slow healing down and will do more harm than good. The biopsies all ended up being endo, which was no surprise.
I have also enrolled in a genetic endometriosis study. All it involves is a phone interview, your operative and biopsy reports and a saliva sample. If you have been surgically diagnosed with endometriosis, check out this link: http://www.endtoendo.com/End_to_Endo/Endometriosis_Research_Study_End_to_Endometriosis.html
You never know, a little of your spit might go a long way in helping medicine treat endo more effectively, or better yet cure it! I have also been ruthlessly editing the wiki article on endo, lol and raising some very interesting points about Sampson's theory and general medical attitudes of doctors in the forums at www.obgyn.net. Another study I found of interest found biopsy confirmed endo in 4/36 female fetuses at necropsy. http://www.ncbi.nlm.nih.gov/pubmed/19358700?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
I have been on a bit of an endo awareness/accuracy kick lately. I go through my spurts of generalized frustration and disgust on how little doctors know about endo even though the information is there, and how ALL the MANY MANY myths continue to circulate.
Many pain free days! xox
I saw my endo specialist last week, and she said it is normal to experience a lot of fatigue and shooting pains or a while after such a big surgery. She said to keep taking it easy and allow myself to heal. Pushing myself too hard will just slow healing down and will do more harm than good. The biopsies all ended up being endo, which was no surprise.
I have also enrolled in a genetic endometriosis study. All it involves is a phone interview, your operative and biopsy reports and a saliva sample. If you have been surgically diagnosed with endometriosis, check out this link: http://www.endtoendo.com/End_to_Endo/Endometriosis_Research_Study_End_to_Endometriosis.html
You never know, a little of your spit might go a long way in helping medicine treat endo more effectively, or better yet cure it! I have also been ruthlessly editing the wiki article on endo, lol and raising some very interesting points about Sampson's theory and general medical attitudes of doctors in the forums at www.obgyn.net. Another study I found of interest found biopsy confirmed endo in 4/36 female fetuses at necropsy. http://www.ncbi.nlm.nih.gov/pubmed/19358700?ordinalpos=2&itool=EntrezSystem2.PEntrez.Pubmed.Pubmed_ResultsPanel.Pubmed_DefaultReportPanel.Pubmed_RVDocSum
I have been on a bit of an endo awareness/accuracy kick lately. I go through my spurts of generalized frustration and disgust on how little doctors know about endo even though the information is there, and how ALL the MANY MANY myths continue to circulate.
Many pain free days! xox
Sunday, March 29, 2009
Surgery and More
I am sorry I haven't updated yet after my surgery. Much has happened :)
Surgery went well. It was longer and more involved then initially expected. Dr. W. did a deep excision of endo under the right uterosacral ligament (2 places), the posterior cul-de-sac, and the endometrioma in the right abdominal wall. The endometrioma actually went through to the peritoneum, and she could see a collection of old "chocolate" material with the laparoscope. Because the lesion was so deep, I ended up needing a mini laparotomy, not a simple excision. Surgery was supposed to take an hour and a half, and ended up taking nearly 3 hours.
I woke up and felt OK, just very tired and very stoned. I did not get sick :D (a BIG thank you to my anaesthetist. I didn't get to see her after surgery, but she was great! Know you are VERY appreciated!) I didn't stay in the PACU very long, I then went to my room. The first few hours are a bit of a blur. I might have been sleeping, but I might have just had my eyes closed, I don't know. I remember looking at the clock every 10-20 minutes or so. I also really had to pee, but I couldn't because I was way too dizzy when I tried to sit up on my own.
Eventually I was able to get up, and I also go my cell phone (dangerous). Evidently the guy in the room next to me couldn't feel his penis. And, I, in my highly medicated state thought it was the funniest thing ever and decided to text most of the people in my phone about it. At 2 am. Again, guys, I am sorry...
I couldn't sleep, so I ended up talking nutrition with the night nurse for quite a while. Damn, those heparin shots hurt. I still have bruises. I am really tired and this is starting to get random. I will continue in the morning if I am not so exhausted and sore.
xox
Surgery went well. It was longer and more involved then initially expected. Dr. W. did a deep excision of endo under the right uterosacral ligament (2 places), the posterior cul-de-sac, and the endometrioma in the right abdominal wall. The endometrioma actually went through to the peritoneum, and she could see a collection of old "chocolate" material with the laparoscope. Because the lesion was so deep, I ended up needing a mini laparotomy, not a simple excision. Surgery was supposed to take an hour and a half, and ended up taking nearly 3 hours.
I woke up and felt OK, just very tired and very stoned. I did not get sick :D (a BIG thank you to my anaesthetist. I didn't get to see her after surgery, but she was great! Know you are VERY appreciated!) I didn't stay in the PACU very long, I then went to my room. The first few hours are a bit of a blur. I might have been sleeping, but I might have just had my eyes closed, I don't know. I remember looking at the clock every 10-20 minutes or so. I also really had to pee, but I couldn't because I was way too dizzy when I tried to sit up on my own.
Eventually I was able to get up, and I also go my cell phone (dangerous). Evidently the guy in the room next to me couldn't feel his penis. And, I, in my highly medicated state thought it was the funniest thing ever and decided to text most of the people in my phone about it. At 2 am. Again, guys, I am sorry...
I couldn't sleep, so I ended up talking nutrition with the night nurse for quite a while. Damn, those heparin shots hurt. I still have bruises. I am really tired and this is starting to get random. I will continue in the morning if I am not so exhausted and sore.
xox
Monday, March 16, 2009
Surgery Today
Today is the big day. I can't believe it is here. I go into the hospital at 12:15, and surgery will be at about 2:15 this afternoon. Even though I know everything will be OK, I am still really freaked out, again the emetophobia thing. I am also not too thrilled about having to have the surgery as an inpatient, but at least it is only one night and my doctor has requested a private room for the emetophobia to help minimize anxiety.
I think I just need to breathe, and try to relax, because I am just a little bundle of anxiety right now. I sure hope they give me some Valium once I arrive at the hospital to try and alleviate the knots in my stomach, shakiness, dizziness, difficulty breathing and the racing heart.
Any positive vibes anyone wants to send my way will be greatly appreciated!! I will update on how the surgery went and how recovery is going as soon as I am able.
I think I just need to breathe, and try to relax, because I am just a little bundle of anxiety right now. I sure hope they give me some Valium once I arrive at the hospital to try and alleviate the knots in my stomach, shakiness, dizziness, difficulty breathing and the racing heart.
Any positive vibes anyone wants to send my way will be greatly appreciated!! I will update on how the surgery went and how recovery is going as soon as I am able.
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