Apps to manage endo
Hey all! Have you ever tried using apps to support your endo journey? My doctor recommended a program called manage endometriosis with an app called Oneleaf. Apparently it helps with pain relief. Looks quite interesting but was wondering if you guys have tried anything like that? I’m only using a symptom tracker app so far.
Can you include a “Canadian” Section on the icarebetter website
I think your website is awesome. That said, it has an American focus. Our healthcare system is public in Canada and I am wondering if you could add a sub-menu where Canadians can post their comments and questions as well. This would help endo physicians in Canada as well. Our disability and insurance plans are also different than in the US and as such Canadian women would like to be able to discuss this as well within the context of Canadian medical and disability parameters. Thanks.
What was the first thing that you lost because of your endometriosis?
It is like a full-time job to deal with endometriosis. And endometriosis has significant social, public health, and economic implications. It can decrease quality of life due to severe pain, depression, anxiety, fatigue, and infertility. It can ruin plans, education, relationships, friendships, families, parties, etc. Every person in the endo community has lost things to this disease. But patients tend to keep it to themselves and stay silent about this. However, it is extremely important to talk about these implications so that society hears how detrimental this disease is to the members of society. Endometriosis is not only a health issue but a social challenge.
Please share your experience and tell the world what the first thing you lost because of endometriosis was.
Severe pelvic pain
Severe pelvic pain throbbing can’t Sid or walk as pain is going down legs .
What were your uncommon symptoms of endometriosis?
Common endometriosis symptoms include:
- Painful periods or dysmenorrhea
- Infertility
- Diarrhea during period
- Pain during intercourse
- Heavy or abnormal menstrual flow
- Abdominal or pelvic pain after vaginal sex
- Painful urination during or between menstrual periods
- Painful bowel movements during or between menstrual periods
- Gastrointestinal problems, including bloating, diarrhea, constipation, and/or nausea
But not all symptoms are as common as those listed above. Many people might be experiencing some uncommon symptoms but never get validation because others never mention those symptoms. If you think you have a symptom related to your endometriosis that is not as common as others, please let others know.
Consequences of many laparoscopic surgeries
What is not discussed much are the consequences of many laparoscopic surgeries for endometriosis. I had 3 early laparoscopic surgeries for endometriosis and a 4th laparoscopic surgery that did hysterectomy with bi-lateral oopherectomy (4th surgery).
What is not discussed are the consequences of these surgeries that show up immediately post-operatively or long term. My first lap surgery at age 21 left me with a hydrocele on the right round ligament that was caused by the surgeon “picking” black endo lesions off the ligaments and trying to loosen them. I had pain in right groin immediately post-op at age 21 and sharp pain putting right foot on the ground when walking or turning. By age 27 imaging showed nothing. However, one night the ligament “burst” and a fluid filled cyst formed (I had enormous sharp pain for about a minute during the night). Next morning, a small egg-sized lump in groin but it could not be pushed back in. Surgery ensued in groin and it was a hydrocele on right round ligament caused by a bad surgeon “picking” black lesions off my right round ligament when I was 21. I suffered enormously for 5 years with this “injured” ligament. Walking was very difficult and I was trying to enter my profession and really was having a hard time walking. Groin pain is not easily explained, let alone round ligament pain. I think the study of post-operative laparoscopic consequences for women with endo need to be studied.
After laparoscopic hysterectomy at age 33, I had weird rectal pain. Like hot pokers in rectum. I felt tethered with a rope between my belly button and rectum. I had had deep rectal endo excision. I felt heavy post-operatively like a football in my abdominal. My pelvic floor felt like it was “dropping” whenever I lifted anything, particularly when pulling sheets out of a washing machine or tugging on bedding to put on a bed. Pulling and tugging or lifting over a litre was a problem. As the day wore on I felt heavier and heavier. By age 44, I had EXTREME pain under laparoscopic portal above the pubic bone where surgeons had gone into 3 times using the same portal. They should not have done this. The pain was so awful under this portal that I wanted to stab a knife into it to get rid of the pain. Anything. A burning cigarette would have felt “good” too if I had jammed it into this site. Imaging showed nothing. 26 surgeons seen in Ontario, Canada. Nothing. Many emergency trips, much imaging. Nothing showed. Cortisone shots at site helped but I w cut off and denied after about 5 years and they really had stopped working. I could not get morphine for pain. I wanted to die. I could not keep going. Waves and waves of pain all day every day at this portal site.
Age 55, I went to San Francisco and was cut open in exploratory surgery. I paid for this surgery as I am Canadian and cannot get US insurance. Large neuroma underneath the laparoscopic portal. Also, large occult inguinal hernia under this laparoscopic portal. Also, broken hydrocele wire found. 15 years of suffering with all this as physicians do not understand that laparoscopic surgeries have consequences. They are NOT “EASIER’ and take DaVinci robot that was used during my hysterectomy at age 33 did damage as did the surgeron.
Age 57, more damage due to endo and its repeated laparoscopic surgeries. Another surgery in New York City. Groin surgeon. Trochar hernia and belly button hernia – occult again so they did not see on imaging and occult hernias not fixed in Ontario. Another inguinal hernia as well. Vaginal vault lift. Rectocele and cystocele will be repaired later.
I was told by US Gynecologist that the “frailty” of a pelvic floor in someone like me who has had many laparoscopic surgery (only 4) for endometriosis “is not well understand.” What is also not “understood” are the “consequences of many laparoscopic surgery on the groin”. Hernias, hernias, neuromas, prolapses etc. Studies need to be done. I believe full incisions are better option.
What is it like living with endometriosis?
Pelvic Floor Physical Therapy leads to improved painful sex, chronic pelvic pain and pelvic floor muscle relaxation.
Pelvic floor physical therapy is becoming very popular among those with endometriosis. A recent peer-reviewed study shows that regular pelvic floor physical therapy can reduce endometriosis symptoms like painful sex and pelvic pain and improve pelvic relaxation.
Please share your experience with physical therapy here.
Why can’t I find Dr.Seckin listed in here?
Doctors get listed on iCareBetter with several mechanisms:
- They apply to be vetted with their surgical videos. These doctors will have a “Video Vetted” badge on their profile.
- They express their interest in helping endometriosis patients. These doctors do not have a “Video Vetted” badge on their profile.
- Patients recommend them. These doctors do not have a “Video Vetted” badge on their profile.
Dr. Seckin has not been in any of these categories yet.
Surgeon name that had saved ovaries with a 9cm cyst
If any of you have had a surgeon to remove a chocolate cyst and was able to save your ovaries please let me know. I will travel to this surgeon.
Inflammation gene may be possible drug target for endometriosis
What was your out of pocket cost for endometriosis surgery?
Surgical treatment is the gold standard of care for endometriosis. However, this is a costly procedure. In many cases, health insurance covers part of or all the costs. But in some cases, patients will have to pay the total costs or at least a part of it from their pocket. Many patients are now looking for surgery and wonder what the out-of-pocket cost looks like. If you had endometriosis surgery or have figured this out with your insurance and doctor, please share what the out-of-pocket costs looked like. Your experience will help many people understand the procedure costs and make an informed decision.