I have taken my time processing the events from the past week before sitting down and writing. I am very pleased to tell everyone the good news I received in my follow up appointment last week. At least good news, if you look at it from the perspective of a rpl (recurrent pregnancy loss) warrior.
On Thursday last week, we were diagnosed with high NK cells (natural killer cells) and very high activation power of these ones. What does that mean? NK cells are an army of warriors that protect us against infection; bateria, virus and cancer cells. In pregnancy, they have some kind of agreement with the uterus that they won’t cause a problem, even though the embryo is made up of half foreign genetic material. This agreement means that, in a normal pregnancy, the NK cells will protect the embryos rather than attack them. This is highly clever of the body. Very ingenious. However, in my body, this agreement didn’t happen. NK cells not only recognised the embryo as altered self and foreign but they also called up the bullies; the most aggressive cells to destroy the poor little soul. I have also read from doctor Beer (Is your body baby friendly?) that these bullies get progressively better at destroying the enemy (embryo in this case) the more times they are exposed to it. this means the more miscarriages someone has, the more likely killer cells are going to kill and dispose of it in record time. Hence why I was not only suffering from miscarriages, but also infertility. The embryo will be dead even before you know you are pregnant. In my case, these deaths were accompanied by severe pelvic pain and chronic inflammation making the uterus one of the most hostile places ever. How can I be relieved that this is happening to me?
a) This was already happening and I was to a degree conscious that that was the problem. However, I had unexplained pelvic pain, unexplained infertility, unexplained joint pains, unexplained miscarriages, unexplained rashes, unexplained many things. When you are faced with a lack of diagnosis and recognition of your pain, you start to think you must be a hypochondriac or, worse still, an attention seeker or mentally insane. It not only took time to get here, but tremendous amount of research, strength and courage that I wasn’t insane. I have been accused and been “put in my place” many times by doctors, friends, family and even my partner. They told me that I couldn’t know what was happening to me, they told me it was bad luck, they told me it’ll happen in the end, they told me I was too young to have joint pains, they told me it was unlikely that I was going to find a cause for my pelvic pain, they told me that I couldn’t know I was pregnant before taking a pregnancy test, they told me that having this amount of pain in pregnancy was normal, they told me that I wasn’t a doctor. And today is the day that I can say fuck it to all of those sentences. (Not to the people, because I know that sometimes things are said in good intention). Today is the day I reap the benefits from all my research and hard work learning science that I felt incapable of learning. The day that I was right for once, even if it is to my detriment and the detriment and pain of all those lives lost.
Their lives are not lost, because I have fought for them and I will always fight. Every tiny one of those babies I’ve lost I love with all my heart and soul until the day I die. One day I hope that I will be able to see them all! Oof, I got emotional there.
But, yes, that is the point. By the way, waste no time in trying to look at NK cells on the NHS websites. They do not “agree” with them unless you look at Tommy’s clinic or Dr Quenby’s Institute in Coventry. The latter even said herself that the NHS wouldn’t fund clinical trials for a drug she already knew prevented miscarriage. However, without clinical trials it is not scientific, they won’t approve of said drug, it won’t be recommended and people will continue to miscarry. As you can see, I am fuming about this.
Please, feel free to ask any questions regarding the scientific/unscientific nature of these theories, but as of now, I’d rather leave the NHS alone. (If you are suffering from rpl, Do NOT listen to the NHS. They will tell you it is bad luck. They will also tell you that you can’t improve your egg quality by doing anything, and that is clearly BS. You just have to read It starts with the egg to find out).
For perspective here is a timeline of what I, and then we, had to go through before we got to this point:
Year 2011 infertility of unknown origin diagnosed.
April 2017 spontaneous pregnancy.
02/06/2017 first complete miscarriage at 6 weeks and 4 days
20/11/2018 second complete miscarriage at 5 weeks and 3days
08/04/2019 Referral to the Gynaecologist.
30/05/2019 Chemical pregnancy. (unrecognised by doctors)
15/05/2019 Dr Scott Tests ANA positive suspicion of autoimmune disease
14/06/2019 Semen test analysis
18/06/2019 First visit to the Gynaecologist for pelvic pain
03/07/2019 First GP fertility investigations
06/08/2019 Referral to fertility clinic.
18/09/2019 First appointment with fertility clinic.
30/10/2019 referral to IVF by fertility clinic for April 2020 for unexplained infertility.
22/10/2019 Laparoscopy shows scarring but no endometriosis. Referral to the pain management clinic.
November 2019 Ureaplasma infection diagnosed by Serum, Greece.
January 2020 Doxycycline for 25 days. (the worst meds I’ve ever been on)
March and April 2020 Covid 19 and IVF cancelled.
05/05/2020 Pain management write back to the GP to tell them to make an effort to further diagnose the cause of pain.
19/05/2020 third miscarriage at 6 weeks and 2 days.
June 2020 Funding withdrawn from IVF.
10/06/2020 Referral to Rheumatology
08/07/2020 Referral to RMC (recurrent miscarriage clinic)
23/07/2020 Second Greek test. Infection cleared.
10/08/2020 First appointment with private clinic in London RM tests and NK cells tests. Thin lining identified. (To take progynova aka oestrogen)
03/09/2020 Follow up appointment in London. Diagnosed with high NK cells. Lining responded well to treatment.
10/09/2020 NHS RMC telephone appointment. (can’t wait)
b) Luckily, there is a treatment for these rascal NK cells. Although expensive, we think we want to give it a proper go, as it feels it’s our best chance so far. The NK cell treatment I am going to follow consists of:
Hydroxychloroquine every day. (It is an antimalarial drug, however, it is used to treat lupus and rheumatoid arthritis as it is thought to modulate the immune system). I have been on them for 4 days now and I can happily say that my pelvic pain has disappeared and my joint pain is much much better. I took a walk just to see what I could do without feeling pain and it was a wonderful feeling, close to the time when I first got my contact lenses and I realised wow, people see all this detail! I felt like I was born again, like a child who has been at home for very long and suddenly can go jump on the puddles. (great info to tell the rheumatologist, as I suspect I might have either arthritis, lupus or some kind of beauty like that).
The other part of the treatment is to go to London every month around ovulation time to have an intralipid infusion. The intralipids bind to the NK cells making them chill the fuck out. If I was to become pregnant, I would have to go for scans and intralipids on week 4, 6, 8, 12 and 16. All in all, I am very happy with my kitchen sink. This is it:
Progynova (oestrogen) days 5-24 in the cycle
Cyclogest (progesterone) days from ovulation to day 27 of cycle
Hydroxychloroquine 400 mg daily
Aspirine 75 mg daily
Intralipids ovulation and pregnancy
For egg quality I take (from suggestions in It starts with the egg. All approved):
B vitamin complex
Magnesium and calcium
Zinc and selenium
Wow, so much! Anyway, there are difficult and challenging times ahead but I have decided to take it day by day. Today I have eaten my broccoli and I’ve had my beetroot smoothie, an achievement in and of itself. I have gone for a walk, chatted to a friend and looked at the ocean. It’s a new life and a new day AAAND I am feeeling goooooooooood.