‘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)

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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.