What My Wife Has Gone Through

My wife started having painful periods in her teens. Some sharing sessions with girl friends made her surprised about how others would just rest for a day and can go out the next day like it never happened. Some can just use a panty liner and get away with some spots on it. Others felt uneasy on the first few days. She would have cramps for more than a week with non stop bleeding requiring frequent changes of overnight 42cm pads.

In her late 20s, the bleeding gets heavier with clotting and started to get anemic. There were days where she is rushed to the hospital emergency for having low hemoglobin level. Normal adult women should have 12 to 16 gm/dL whereas she could go as low as 5.5 gm/dL and maintain 7 to 9 gm/dL after the bleeding stopped.

This went on for a few years until her body got used to the low hemoglobin level. Any attempt to transfuse blood more than a pint would lead to rejection and the extra blood would be expelled from the body. The first time it happened, she was going to pee and the toilet bowl was black, filled with dead blood.

The first Gynaecologist she went to performed an intrusive ultrasound scan and quickly diagnosed it as Adenomyosis. The doctor suggested that she go for hysterectomy because he said  that the chances of successfully having a baby is nearly zero. She was not married then and did not opt for the operation so the doctor only gave medications to relieve the symptoms. The doctor prescribed Tren (Tranexamic Acid) to reduce heavy bleeding. There was no significant reduction in bleeding after years of using it.

Then we got married and she told me the story, so I suggested to find a second opinion, we went to another gynaecologist on 2013. The doctor suggested to try to get pregnant on a 3 month period on Norculut (Norethisterone). He was being optimistic, saying even though the chances are low but it is worth a shot. The medicine somehow alleviated some symptoms but 3 months is the limit of taking the drug. To relieve the pain he gave us Ponstan (Mefenamic Acid 500mg). The pain was reduced but my wife still felt uncomfortable for weeks. The strategy was to quickly have a child and then remove the uterus for the long-term solution as the doctor said, having a child and stopping her periods for 9 months would not cure Adenomyosis, it would just stop it on its tracks and it would continue to progress after giving birth.

After a 1 month break my wife was on Norculut again but this time it was because we wanted to travel on January 2014. After 2 weeks in Japan, we returned to Malaysia, my wife stopped taking Norculut and she had heavy bleeding with huge clots the next day. We went to a clinic to check her Hemoglobin level but the doctor insisted to do some other blood tests and found out she actually had a miscarriage. We proceeded to have a D&C (Dilation and curettage) at the second Gynaecologist's clinic, and that operation made her experience severe blood loss, so severe that we had to admit her to a government hospital for blood transfusion. It was at this time my wife realised there was a bulge just below the navel and felt tender.

We did some research online and went on to discuss with our 2nd Gynaecologist about UAE (Uterine Artery Embolization). The doctor dismissed it saying that it would be a painful and low probability of being any help. I remember him saying "Imagine holding your hand tightly until there is no blood flow, your hand would get numb, and afterwards it will be very painful". Well a case study I read from the internet also said it wasn't really effective as the symptoms could return. We could try it but if it doesn't work, reversing the process would be cumbersome. I didn't do much research into it after that.

Since the gynaecologist restricted my wife to take Norculut any further, we went to visit a TCM (Traditional Chinese Medicine) practitioner recommended by my wife's boss on 2015. The TCM prescribed a complex mix of herbs to be taken at specific time at specific intervals along with advice of restricted foods and lifestyle changes. After 3 months my wife's period was somehow regulated, and the bleeding stopped at the TCM's predicted date. However the pain was still horrible. This also elevated her hemoglobin level above 9 gm/dL. The bulge seemed to interfere with urinating and passing stool.

We were supposed to go on for 6 months straight on the TCM's prescription but it was a bit expensive so we stopped on the 3rd month as one of my wife's relative suggested we go to another doctor. The third gynaecologist prescribed Visanne (dienogest 2mg) for a period of 6 months. The doctor said the medicine is relatively new and said it might or might not work for my wife. The drug was wonderful, there was no pain, just a slight bloated feeling in the stomach. So my wife was pain-free for 6 months without the need for Ponstan. The bleeding was reduced but continuous. This was on 2016.

I searched the Internet and found out about the Osada Procedure. The videos and testimonial from Youtube seemed promising. Doctors from Japan and USA collaborated to scrape off the uterus wall to normal size and stitch it up again. Patients reported instantaneous relief from pain, but that was nearly 8 years ago. I contacted the only doctor that was willing to accept patients, Sherman J. Silber, M.D. from The Infertility Center of St. Louis, Missouri. Sadly, I got a disappointing reply, saying Dr. Silber does not perform the Osada Procedure anymore. The other Japanese doctors I contacted are either dead, retired or does not accept foreign patients that do not speak Japanese.

Now that 6 months period has passed, the doctor restricted us to take it anymore, so we went to see an Indonesian Healer and gave my wife a herbal concoction to drink everyday except during menstruation. In Indonesia the medicine is widely known as "Jamu". I am happy to say that my wife now has a better quality of life, since the pain have greatly reduced and the bleeding is not continuous. The bulge has reduced dramatically too.This has been going on for 3 months now. (March 2017). However during the first 4 days of menstruation the bleeding could still be heavy.

Another treatment worth mentioning is Ayurvedic and Herbal treatment in India. An Indian business acquaintance suggested me to try it out and go to Kerala, India for a month to stay there and undergo daily consulting of the herbalist for at at least a month. The place is known as Kottakkal Ayurveda Hospital. I am planning to do this if the "Jamu" starts to show signs of reduced effectiveness. Meanwhile I did some research again on the internet and I found this link

which claims to have a cure for Adenomyosis. I don't know the credibility of this doctor or practice, but if nothing else works we would have to travel to India and try it ourselves.

I would like to add about the wonderful Sangobion (iron supplement), which is the most suitable supplement to help increase hemoglobin for my wife, as the common Ferrous Fumerate given by the government hospitals proved to be too powerful for her. She'd get nauseous and dizzy even if it was taken after a meal.