‘She’s my prisoner, you know!’ the Red Knight said at last. ‘Yes, but then I came and rescued her!’ the White Knight replied.

So.

I am quite tired from our trip, but I wanted to fill you in on our testing with Dr. White Knight on Friday.

Before we left, I was able to get the results of my CD3 testing by telephone from Dr. Click Clack’s office: my FSH was 42 (the highest it’s ever been on CD3) and my E2 was 70. Sigh. (The local patient of Dr. WK I know reassured me by reminding me that her FSH was 102 when she went to see him.)

The women I have come to know who are patients of Dr. WK’s describe him as charming and as having a way of disarming skeptical husbands…and I am pleased to report that he lived up to this with my husband. At least, enough that Mr. H went through with the tests that were required of him (I don’t have all the details, but I know they were not pleasant procedures).

The first hour or so of our appointment was spent following up on our phone consult (Dr. WK had questions for Mr. H about his family history – some things I could not answer when we spoke a few weeks back, and some further questions for me). Something for those of you out there to ponder: how does fertility look in your family? For example, if you have siblings, look at the first-born, second-born and so on…does fertility decrease amongst the younger siblings? This could be due to infection being transmitted vertically, apparently…this is the case for both Mr. H and I according to our birth order. Pretty fascinating.

Dr. WK also spent time explaining some of the things he told me on the phone, so that Mr. H could understand the reasons Dr. WK believes I acquired some bacteria vertically (I’ve already explained this here). He said that the bacteria has been inside me since birth and has been “munching on” my eggs. MUNCHING!!!!! What a HORRIFYING thought!!!!!!! He also explained my frequent urination (I have crazy frequent urination!).

He showed us diagrams of our reproductive organs and how the infection usually manifests…The male develops an enlarged prostate and scarring starts to develop, causing him to also urinate frequently, have issues with hesitancy before urinating, a less forceful flow, etc. Also, their ejaculate decreases and is less forceful as well. Mr. H. doesn’t think any of this is happening for him, which I am hoping means he is not very affected and may not even need the full treatment. The female develops scarring in various places, including blockages to the glands that produce cervical mucous. She also eventually ends up with shrunken ovaries and diminished eggs.

After Mr. H bravely underwent his procedures, I not-so-bravely underwent mine.

First Dr. WK took a look at my cervix…he explained to me later that he saw signs of infection in the size of it (it is much wider than a healthy woman’s would be…but he didn’t use the word “cervix”…it is some part of my cervix…I think he said “endocervical canal”).  Then he took a swab and a brush (which pinched like a pap smear). Finally, he did a transvaginal ultrasound, and showed me what he was looking at on the screen. I was very nervous – after all, I was about to find out if my ovaries have shrunken to nothing. First, he showed me my extremely thin, almost immeasurable uterine lining and the lines of infectious scarring in my uterus. Not good. Then he showed me the blocked cervical mucous glands. Uh oh. Finally he leaned the wand to my left side to check out my left ovary…I held my breath….He looked long and hard and measured…I can’t even remember what the measurements were, I was so nervous….one point something or even two?….I don’t know…..Then he nudged my leg with his hip and asked, “Did you go to church last Sunday?”….I was so anxious I couldn’t speak….He showed me 5 sacs that he could see on my left ovary. I know it’s not a lot, but it’s better than my worst fears (i.e. nothing at all). Then he checked the right…it looked smaller and we couldn’t see a lot on it because one sac was enlarged – Dr. WK said possibly either a growing follicle or a cyst…hard to say.

After this, we returned to Dr. WK’s office to discuss. His conclusions:

  • Mr. H has a moderately enlarged prostate. It looks like the infection has been at work for a long time – how long is difficult to say – and if untreated, the symptoms we spoke about above will increase.
  • I have an enlarged endocervical canal (or whatever he called it) and scarring and blocked cervical mucous glands due to infection – likely acquired vertically and possibly horizontally as well.
  • Dr. WK says there is no way to know for sure how we acquired this bacteria – if I gave it to Mr. H or if he acquired it as well either vertically or horizontally or both…and he said it doesn’t matter, which Mr. H agreed with.
  • As we are now, he said we have no chance of conceiving.
  • Dr. WK says the good news is that my FSH is “only” 42 and my ovaries are “active”. BUT we do not know what is in those little sacs he saw – there could be eggs but there could also be dust. He has seen that happen before. And there is no way to find out.

So, while he is excited that I have active ovaries, he says he has to be very careful not to promise us anything. He said that he is confident he will find Bacteria X in the cultures (according to a paper he is currently working on, women with the signs indicated in my U/S are 28 times more likely to have this bacteria) and he will have the results for us this coming Friday. He said we can discuss things more at that point. He reminded us that this isn’t just about fertility, it is about my overall health – particularly bone density and my thyroid.

He was kind and honest and informative, and I am glad we made the trip to see him.

I told him I feel like this is my last possible resort for conceiving and I saw how my mother was ravaged in her last few years by autoimmune issues and I want to do what I can for my health.

Then we paid our bill and left.

I think Mr. H. walked away thinking there is nothing Dr. WK can do for us…probably because Dr. WK was so careful about promising us anything. I told Mr. H that isn’t quite the case – he just can’t GUARANTEE us anything. I am sure it will feel clearer when we hear from him this Friday and receive his recommendations.

So.

Phew.

I was reassured that I still have some ovarian action…but cautiously so because we don’t know if there are truly any viable eggs left.

I do feel a strong sense of urgency to get this done. I am not sure if we will have access borrow or charge the money for the treatment, but I would REALLY like to try to get the treatment at the end of November. (I have given up on trying to fundraise – I would like to extend my appreciation to those that reached out – Fran, Rebecca, and Valery….you are all very kind and I am so grateful for your support…I have been in touch with you about returning your funds.)

I am going to be speaking with my new friend, the other local patient of Dr. WK, this week to compare notes on our ultrasounds – I will write about that conversation in my next post.

As always, if anyone reading this wants to know more about Dr. WK, please e-mail me and I will be happy to give you info. (verymadhatter@live.com)

Advertisements

White Knight: Just be brave, and always get back on your horse!

I’m sorry for the long hiatus.

I have had much to digest since the telephone consult.

It seems, based on my history, that I likely contracted a bacterial infection vertically from my mother. Some children manifest this through ear infections and such when they are young. I did have gastroenteritis when I was 12, for which I was hospitalized. And then my menses started quite late – at the age of 15 – and about a year later, I began to experience severe cramps and PMS, and my periods lasted about 9 days. Dr. WK says this is because the bacteria began to move around and thrive on the new hormones in my system. I’m curious – anyone else out there with POF have a similar onset to their period when they were young?

Unfortunately, going on the pill to improve my periods simply masked the problem.  I was told the pelvic inflammatory disease I had at age 21 was the result of Group B strep, but there may have been other bacteria present. I also may have contracted additional bacteria from the very few sexual partners I did have (I thought I was being smart by insisting that any partner I had be tested for STDs, but there are bacteria that would not have been included in that battery of tests). When I went off the pill 11 years ago in order to conceive, that’s when all the trouble appeared to start. The bacteria began to act out in various ways – it attacked my thyroid (hence the hypothyroidism). I developed polyps. I had mild endo. Later, high FSH and ovarian failure as it attacked my ovaries. The ureaplasma is the least of my worries right now, but it’s been a very good thing that it was discovered a year ago and has been too stubborn to get rid of – it is likely the canary in the coal mine of infection for me.  All of these things have yes, interfered with my conceiving, but at the root of them all is this bacteria. Likely chlamydia is one of the bacteria I have. As we know for sure my father was unfaithful to my mother and gave her an STD when I was an adolescent, we are guessing that he was also unfaithful before I was born…which is why my much older siblings, who were born very early in the marriage, seem to have gotten away with not contracting anything. 

On one hand, it is a relief to know that I have found the root of my problems and that it is probably bigger than me and not my fault for being sexually active as a young adult. On the other, I am sad and angry that it took so long to figure this out. And I am afraid that my ovarian reserve is too depleted to conceive now.

Dr. WK is hopeful that, because my FSH is not too high yet and it has been going up and down (last checked in June of this year and it was 40), there many be a chance. He said that the bacteria can make my AMH falsely high, so we can’t trust the test I had done in 2010.  He said that the disease that ravaged my mom was due to bacteria. It attacked her joints and her system and she suffered greatly over the past several years.  He looks for patterns of illnesses and emotional issues in families to determine the destructive path of the bacteria. When I was a teenager, my mother actually lost all her hair due to “stress”. There is a lot in my history and my mother’s history to indicate that I have been burdened with this since birth.

So the next step is testing. Mr. Hatter and I are booked to travel and be tested later this month. It will take 3 weeks to culture and determine what is going on with us and what the treatment plan should be. I am likely the carrier, so will require the most extensive treatment. I am praying that Mr. Hatter has very little that needs attention. It would be great if he could just get away with oral antibiotics. And it would be much less expensive than the both of us requiring IV treatment.

On the up side, I have been able to join a private yahoo group specifically for patients and wanna be patients of Dr. WK. I have been in conversation with women all over the world who have undergone Dr. WK’s treatment.

Some quotes from them to share with you:

“I am a long time patient of Dr. WK (since about 2005) and have 3 sons who are 5, 5, 2 ½.  I assure you, I would not have these boys if it weren’t for Dr. WK and his treatments.” 

“For us it turned out to be a success and we did get pregnant (easy pregnancy) and delivered a son.” 

“AFTER I HAD MY TWIN BOYS, I STARTED TO GET BAD ARTHRITIS IN MY KNEES AND FINGERS (WE SUSPECT IT IS DUE TO INFECTION) AND I DID A MONTH OF ORAL ABX AND THE ARTHRITIS SYMPTOMS WENT AWAY AND I GOT PG WITH MY THIRD SON ACCIDENTALLY!”

“It’s been only 3 months post treatment for us, and the changes are night & day for us. We are so happy we made the trek, and although it was expensive, it was worth every penny. We feel about 10 years younger!”

So…pregnancies abound in this yahoo group, and people feel better, more energetic post-treatment and it alleviates arthritis symptoms. No one wrote me to say, “I regret going to Dr. WK – save your money!” They all love him and are so glad they did it.  That’s very reassuring.

Once we have the testing, I am not sure when we’ll be able to do the treatment – it depends on when we can get the money together. I am crossing my fingers I just have to go by myself so it is much less expensive. We’ll see.

As things stand now, I feel physically terrible. Especially when I wake up – I have very little energy and I have abdominal cramps and breast pain, like my period is coming, but it never comes. I am nauseous with a burning feeling in my stomach sometimes. Sometimes urination is painful. Sometimes intercourse is painful. And I am dry and itchy and have a lot of vaginal discomfort, if that makes sense. I’ve always had on and off yellowish vaginal discharge. I also have aches in my joints. Looking at these symptoms, which are subtle and have been easily explained away much of the time, I totally buy that my body has been overcome by this bacteria. Although some steps I’ve taken (supplements, Traditional Chinese Medicine, naturopathy) have alleviated some of the symptoms, they have not and will not cure this.

I’ve stopped the Low Dose Naltrexone I’ve been taking for my elevated thyroid antibodies and am only taking a few supplements here and there. I want my body to do whatever it does on its own (unpleasant as that might be) so that when we go for testing in a couple of weeks, Dr. WK gets an accurate picture of what’s going on so he can treat it. 

I’m no scientist, Erin, so I am not sure I can respond to your question of colonization versus infection. I understand that we all have bacteria in us and all around us, but I think the testing that Dr. WK does indicates whether or how much one’s immune system is compromised by the bacteria. You and I may both have Group B Strep in our uterus (apparently about 10% of women do, and they should receive antibiotics during labour in order not to pass it on to their baby), but my count may be much higher. Isn’t that the definition of infection? And this is why some women can have ureaplasma (another common bacteria) and conceive and have a baby, and others can’t. All I can say is this is the first explanation I have been given for my infertility that makes sense to me on an intuitive level. It connects the dots for me in a way nothing else has.

And, if I could turn back time, I would take every penny of the thousands of dollars we spent on medications and treatments and supplements and bet it all on this horse. If anyone out there is suffering with high FSH or endo or something leads you to believe that you may benefit from the path I am taking, please e-mail me and I will give you info. After all, that’s why I am writing this blog publicly – I hope I can help other women/couples to pursue this treatment earlier than I did. I so wish someone had pointed me in this direction when there was still a definite chance I could have a baby. As it is now, we are rolling the dice and I am hoping that by becoming Dr. WK’s patient, I will be able to avoid the pain and suffering my mother experienced in her later years.

 

“Begin at the beginning and go on till you come to the end; then stop”

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.

“I know who I WAS when I got up this morning, but I think I must have been changed several times since then”

Welcome.

Some of you are old friends and some of you are new…thank you for coming.

This is a new chapter of an old journey.

As you will see if you go to my “About” page, I’ve been around the block a few times with health and fertility challenges.  11 years’ worth of blocks. For the first 7 years I was diagnosed with various things and every time we thought we had resolved whatever it was, still nothing happened. No pregnancy. At the age of 37 I was told I had High FSH and Premature Ovarian Failure and that my husband and I would not be able to conceive with my eggs. I persevered, anyway, turning over every stone I could in my quest to have a child of our own. At that time, I started my first Late for a Very Important Pregnancy blog on Blogger and joined a community of incredible women from all over the world who were also struggling with fertility challenges. I have learned a lot from the women I have met via blogging and I have explored every avenue I could to try to conceive. At one point, about a year ago, as some bloggers do, I felt overwhelmed by how public my journey had become and I decided to take my blog private and share it only with a select few (100 select few, because that’s all Blogger would allow).

Why am I opening up my story to the public again?

Because after 11 years and tens of thousands of dollars invested in medications, supplements, alternative therapies, etc., I think I have figured out how to finally resolve my Premature Ovarian Failure. I feel it is my responsibility to share this with other women also suffering with this devastating diagnosis who may benefit from the treatment I am about to undergo. I wish I had found out about it sooner as I am now 41 years old and it may be too late for me to conceive. Regardless, I am going to try. And this treatment will help prevent the development of other health problems resulting from this condition (i.e. osteoporosis).

In the posts you are about to read here, I am going to describe my experience and everything I learn as I consult with the specialist I plan to travel to see and as I undergo testing and treatment. Unfortunately, for legal reasons, I cannot name my specialist or his clinic on this public blog. So, as it is the White Knight who rescues Alice from the Red Knight and takes her to the eighth square where she is finally crowned queen, that is how I will refer to this doctor – as far as I am concerned, he is my  White Knight and my last hope for achieving pregnancy. That said, for anyone reading this, if you want specific details about who he is and where he is located and so on, please e-mail me and I will give you all the info I can (verymadhatter@live.com).

I am excited and hopeful about this next leg of what has been a long and difficult journey. Because it is going to cost about $20,000 for the travel and medical expenses involved, and my husband and I do not currently have access to the funds to cover it, it may take a little while for me to get to the treatment stage. I am determined to do it, though. Because of this, my best friend encouraged me to set up a Go Fund Me page to ask for help from readers. This makes me feel a bit uncomfortable because I think, “Why should anyone help us?”, I swallowed my pride and created one. There is no obligation whatsoever, but if you can spare a small amount to help us reach our savings goal a little faster, I would be very grateful. Or if you can create awareness about my blog on your blog, that would be helpful, too. I want to help as many women as I can with my story.

Ready?

Let’s do this.