Some of you know me very well, and some of you not at all.
So here are some details to help those of you that need to fill in the blanks as we go:
Diagnosed with Premature Ovarian Failure: June 2009 at age 37
My Current Age: 41
Highest FSH tested: 27 on CD3, 53 mid-cycle (most recent test was in June when it was 40 mid-cycle…actually, there is a more recent test, but I haven’t accessed it yet because I need to request the results in writing from Dr. Beehive – long story, which ends with me deciding I never wanted to see her again). My FSH has been much lower and better, though…especially last Novembe r (FSH – 12, E2 – 308 (83 in U.S.)
AMH test: 20 pmol/L (January 2010), which was about average for my age at that time…now, who knows?
What I’ve been doing most recently for my fertility: Last fall I started seeing a doctor who specializes in naprotechnology in the hopes that she could help me. She was the first doctor I’d seen to test me for infection and she discovered elevated ureaplasma, which can interfere with implantation. I found this infuriating because NO DOCTOR had checked this before. Mr. Hatter and I were put on antibiotics for it, but unfortunately, 11 months, 3 different antibiotics, 1 round of homeopathic remedies, and many weeks of abstinence later, the infection is still present. Dr. Click Clack, as I call her, also put me on Low Dose Naltrexone, as she discovered elevated thyroid antibodies (I also have hypothyroidism). I took this for about 8 months, but recently stopped as I want to go see Dr. White Knight for his testing with a blank slate.
Cycles: Up until this year, I had skipped about one period each year for the past few years, and had the odd long or short cycle. But then, this year, everything changed. I had some serious stress in my life in early 2012 and everything went wonky. My last real period started on April 1st. Since then, I’ve had spotting (once in June and once a couple of weeks ago) and that’s it. This has been terrifying for me.
How I Feel: So, with a stubborn infection that is clearly resistant to antibiotics and an MIA cycle, I have to admit, I am pretty freaking upset and part of me is petrified that THIS IS IT. I am DONE. The menopause train has come and gone and I am left here on the platform with a couple of baby toys sitting in my underwear drawer from those first two IUI cycles when I thought I would be a mom. I am so sad and angry that no one thought to check me for ureaplasma before (some doctors don’t “believe” it has any effect on fertility). I wish that all the money we’ve already spent on injectables and Chinese medicine and so on were still in our bank account so that we could afford what we need to do now. What if it’s too late? What if I am out of eggs? But if I think like that, I’ll just cry and cry and not take any action, which means if there is a slight chance that things can be turned around, I won’t find it.
What Gives Me Hope:
- I’ve heard stories of women whose cycles disappeared under severe stress (my Dearest Friend’s sister’s cycle when AWOL for a year after their father passed away when she was 21).
- There are many women out there over 40 with my diagnosis who have conceived naturally…even without a period. (just google high FSH success stories and there are a LOT of them)
- Dr. White Knight is one of few doctors who believes that Premature Ovarian Failure is caused by infection. That’s right. NOT simple bad luck or genetics, but bacterial infection. I read a case study of his about a woman who was 39, presenting with my diagnosis who hadn’t had her period in 5 months. He tested her for bacteria and then treated it with antibiotic therapy, including uterine washes. A couple of months later, she was pregnant.
- When I contacted Dr. WK, he referred me to a patient who lives near me. She was kind enough to chat with me and share her experience. Here it is:
She was very sick as a baby – a lot of ear infections and so on – and then when she became a teenager, her period NEVER CAME. At the age of 19, she was told she had Premature Ovarian Failure with an FSH of 72 (!). She was on Provera for 10 years (!) and took BCPs throughout her twenties and that’s the only way she could have a period – not naturally. After ten years, she wanted off synthetic hormones because she was afraid they would cause cancer. She went to a few different doctors (including a couple I have been to: Dr. FSH and Dr. Beehive – such a small, cruel world!) and tried DHEA, TCM, acupuncture, everything – like me and like most of us – to conceive. When she was 29, her mother saw Julia Indichova, the author of Inconceivable, on Oprah. Local Lady got the book and read it in a day. Dr. WK is mentioned in it and so she got his book and read that, too. There was a case in his book that was very similar to hers, and she felt compelled to go see him. You see, Dr. WK believes in “vertical transmission” (via the birth canal) of bacteria along with other methods of transmission – and that’s what he believes happens to some of us. Local Lady and her husband have only ever been with one another, but when she was tested, Dr. WK found a whole bunch of bacteria. Local Lady’s grandmother and aunt have both had persistent coughs all their lives, even though they never smoked. It is thought that Local Lady has had this overgrowth of bacteria since birth. And, since Premature Ovarian Failure not only causes infertility but bone density issues, she was pre-osteoporosis when she decided to go see Dr. WK and her main reason for going was for her overall health.
Two years ago this month, she went to see Dr. WK. (By the way, Dr. FSH and Dr. Beehive told her his methods were nonsense and if she went to him, they would dismiss her as a patient! So she never told them she was going in order to be able to continue to access their lab for any local bloodwork! So brave!). That September of 2010, her FSH was 109 (!). She had her phone consult and then went to City X for two days for testing (a girlfriend joined her because her husband couldn’t leave work even though Dr. WK really wanted him to be tested also) and 3 weeks later, Dr. WK called her with the results: several bacterial infections. She then went down with her parents for 2 weeks of treatment (again, her hubby couldn’t come even though Dr. WK wanted him to – instead, he prescribed very strong oral antibiotics for him). The treatment consists of IV antibiotics and uterine washes. It lasts about an hour and a half each day and it is not fun. She said that I will feel sick and my arm will hurt a lot and I will have a horrible metallic taste in my mouth. The treatment is followed by a course of probiotics, of course.
As part of her testing, her AMH was checked and Dr. WK told her that she had very few, if any eggs, left and she may never conceive. She had been prepared for this possibility, but felt good about what she had done for her health. She was very happy with how the staff and Dr. WK treated her – she said they were all wonderful and she can’t say enough good things about him. They are still in regular contact.
Upon returning home, she said she felt amazing. Better than she ever had and full of energy. People constantly complimented her on how she looked. We compared notes about feeling fatigued and slightly depressed all the time. (In my research I’ve noticed that people with Chronic Fatigue Syndrome are sometimes given a course of antibiotics and that helps….I’m starting to wonder about this connection between bacteria and other conditions)
In December, Local Lady’s FSH went down to 60.
In January, it went down to 40.
At the beginning of February, it was 28.
Then, on February 14, she spotted – the first time in her whole life she’d bled naturally.
At the end of February, her FSH was 7 and Dr. WK called her and told her she should try to get pregnant.
Little did they know, she already was – after feeling sick for 3 weeks, she took a test and it was positive!
She now has a beautiful baby!
(By the way, the day they returned home from the hospital, there was a giant arrangement of fresh-cut flowers waiting for them from Dr. WK!)
My Plan: Money continues to be an issue, but thanks to some incoming money (Mr. Hatter and I are both self-employed) and a generous donation, I have enough for my telephone consult and some saved towards the testing. (See the right column for fundraising/saving efforts.) So, my telephone appointment with Dr. WK is set for September 26th. Before that day, I need to fill out a form and send it back to him, and I also plan to read his book. On September 28th, I have an appointment with a local gynaecologist that I have a referral with. I hope that whatever I learn about on the 26th will help me to know what to ask of the OBGYN on the 28th (i.e. perhaps to be my local connection for blood testing and so-on if he is agreeable to that and the methods I am pursuing). I have picked up some more work for October, which will help, too. I am hoping beyond hope to get the testing done in October, and then the treatment in November or December. That is my wish. Let’s see if the universe cooperates.