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If you’ve been following my hormone journey on instagram, you know that things in terms of my hormones have been off for a while.
I stopped taking birth control June 2017 to give me body time to adjust and “normalize” before we started trying to get pregnant. I didn’t expect to still be on a journey of healing my hormones almost 2 years later.
For the first 6-12 months we were in the phase of giving my body more time to adjust to being off the pill. My OB wasn’t concerned about my lack of menstrual cycles or the fact that they were 80+ days apart.
We all thought my body needed more time.
Then I started to develop acne. At first, it was just a few pimples. It was annoying because I had clear skin while I was on the pill. I can remember being bummed and feeling self conscious about the few pimples I had.
But it just continued to get worse and worse for over the next 8 months. I remember feeling self conscious about going home for Christmas because my family haven’t seen me since my acne developed. In December I remember thinking, this is bad, I can’t imagine it getting any worse.
But it has. It has gotten worse and now I long for, in a weird way, to have the acne I had in December. Now I think that was mild.
I had my first round of blood tests and an ultrasound done in January. I have some characteristics of PCOS, but not many of the classic symptoms. The OB said “It might be PCOS – let’s start you on clomid.”
She didn’t even ask if we were trying to conceive. We were just at the very beginning of this journey and it seemed like she didn’t care about any of the symptoms I was having. I felt like we left with a “you might have PCOS but I can’t help you unless you want to get pregnant.” No additional blood work was ordered. No follow up appointment suggested.
The tears started coming. Thankfully Ryan was there with me, otherwise I would have left at that point. We had to push and ask who else we could see.
We left with a referral to an endocrinologist.. for 4 months later.
I also scheduled an appointment with the dermatologist, for 4 months later.
Nothing moves fast in the health care system.
I cut out dairy, because many people say cystic acne and dairy are related. I cut out soy. I was mindful of sugar. And I’m already gluten free.
We decided to visit a naturopath in the mean time, which was a bust. She told me me ovaries were weak. Surprise, that’s why I was there.
She wanted to sign me up for a program where I would see her every 2 weeks for 3 months – I live 2 hours away. She told me that phone appointments would be twice as expensive as an in office appointment. We didn’t even know what this program would look like, because she said she wouldn’t change much about my diet.
It wasn’t a good match for us so we decided to not move forward with that.
Time crept by, and we finally had our first appointment with the endocrinologist. He was refreshing. He cared about figuring out what’s going on. He ordered additional blood work – I am really working through my fear of having blood drawn during this process. He said PCOS is a diagnosis based on exclusion. Meaning, you test for other things, and if I don’t have those, then what’s going on could be caused by PCOS.
You want to rule out other causes first, since PCOS is a spectrum it can be challenging to diagnose.
We met again to discuss my labs. Based on my blood work, I have some levels that are consistent with PCOS (high testosterone, high androgens, elevated prolactin) and others that aren’t (no insulin resistance, not overweight, no cysts on my ovaries). He diagnosed me with non-classic PCOS.
We discussed treatment options, but none of them are ideal for me. I want to make sure my body is as healthy as possible before trying to get pregnant but all of the medication options cannot be taken when trying to get pregnant.
Then there is the possibility of infertility. Some women with PCOS have infertility and others don’t. It’s scary to think that I am already at risk for infertility and miscarriage because of having high testosterone and TSH. What are the treatments for this? Medications that I can’t be on when trying to get pregnant.
See the cycle?
It kind of seems like no one knows what to do with me since we’re wanting to start trying in the near future.
I wish I had more answers. I wish I had someone to advise me on what to do. It’s been hard because you really have to fight for yourself to see the right doctor. You really have to push and say “this doesn’t feel normal” and still at times I was met with “you’re fine, you’re in the upper range of normal, but still normal.”
But what I’m going through isn’t normal. My body is giving all kinds of signs that something isn’t normal. Irregular cycles and bleeding, cystic acne, hair growth, painful intercourse.
So this is where we are at.
We’re looking into other options, like seeing a functional doctor to look into taking a few additional supplements to see if those can help lower some of my high levels.
What’s God been teaching me through this?
Honestly, I feel like I am not walking this trial well. I have been trying everything in my power to fix it. To fix my acne. To fix my hormones. I spend too much time on google looking for answers, hoping I’m going to find something to help me.
I’m still at the place where I haven’t fully accepted my PCOS diagnosis. But I do know that God has given me a platform to share my story (and his story) and be vulnerable. He will use my story for good. So I hold onto that and look to him for courage as I share what I’m walking through with you.
4 years ago when I was walking through debilitating anxiety, the one thing that helped me was sharing my story with other people and finding that others were experiencing similar things. I found that I wasn’t alone and it gave me strength.
So I’m doing the same thing. I’m being vulnerable and sharing what I’m walking through, in hopes of finding community and encouragement but also with expectation that Jesus will use my trial to bring you comfort, so that you know you are not alone in what you’re experiencing.
If you are walking through a difficult, tear-soaked season, know I am walking one too. Know that Jesus is walking with you. And we both can be praying for the other, praying that God will make something good out of something that doesn’t seem good.
God doesn’t expect us to handle this. He wants us to hand this over to him.
I hope and pray that you find your answers and treatments for your troubles and that everything works out in the end. Don’t give up hope!
I will pray for you. I am touched by your situation and your fearlessness in sharing your story honestly. We may not know each other, but God knows our hearts and mine will be praying for you. I happed onto your site for the first time and made the Strawberry Mousse Pie recipe. Thank you for a great recipe and all that you create and share so generously with others.
I am so sorry for your pain and the exhaustive search you are on. I believe you and your husband are doing everything right – Keep searching – keep doing whatever it takes – the answer is out there – you just haven’t found it – YET – Keep writing on different forums online – someone who has gone through this or is will see your story – others will have answers for what they found helped them – you might have someone in the medical field see your story – share on different sites – I know Reddit seems to have some great help boards for women who are searching for like minded women – One day you both will look at your family and know you fought hard for it – We women know our bodies – we know when we need to look in different directions and/or walk away – I have always believed this – I’m 55 and I learned this in my 20’s – Prayers are sent for you and yours, and positive vibes across the miles
You deserve to be treated with respect and have your questions answered. It sounds overwhelming. I am so sorry that you are experiencing this. In my experience (60 years), many doctors (both genders) do not listen and often leave you feeling more confused and diminished personally. They tend to dismiss women, and younger ones even more so. We Some younger ones are empathetic. I hope that you eventually find a good plan to manage this. (I know someone in their early thirties who had been on the Pill since 15. ) I am concerned about the after effects and fertility issues. You are thoughtful and articulate and caring to share your story and feelings. I am sure you will help others by doing so.
I should have died at least 6 times, Beth. Recently I passed out and fell down 23 concrete stair and bled extensively from my head. I still have a hematoma. The next month I found that I had a fib that caused the fall and many other. After I got out of the hospital the second time I got shingles (actually the day after). Then came costochondritos. God has definitely been with me when I cried and prayed. I tell this because I know with prayer all things come out the way He intends. God Bless uyou and Ryan. Have faith.
My dear Beth,
I am so sorry to hear of your ongoing search for answers and solutions to your situation. I, too, have had some serious issues with which to deal, though not as long-term as yours. I pray every night, and for awhile I felt as though God just either didn’t hear me or chose not to listen to me, which to me is very close to blasphemy. After some time has passed, I realize that He has plans for us, and it isn’t up to us to question what happens along the way.
Unfortunately, our medical system is not in any way divine, and you and Ryan are 100% right in continuing to search for the best doctor to help you. I truly wish you success and shall include you in my nightly prayers. Lots of good wishes and love, Roberta (I think you both will be fantastic parents!)
Oh Beth my heart goes out to you. I am an Ob/gyn and I don’t want you to give up hope and I will pray you find the right docs to direct you in the right direction. I will continue to pray for you and if I can ever help you or answer questions for you reach out to me. Sandy Gardner
Hi Beth,
I was in tears reading about your journey. Continue believing that God does hear our Prayers…..it is true. I can’t begin to tell you about all the help I’ve been granted because of Prayer.
My daughter has PCOS and Endometriosis. She was told at age 21 that she would likely never have children. She was later blessed with 3. and was 27 when her first child, a daughter was born. They’re all teenagers today 13, 14 & 18. My daughter never had acne but she did have more of the typical symptoms than you do. Like you tho she did not have weight issues. She was also in awful pain all the time from the Endometriosis until she chose to have a complete hysterectomy at age 45. Find yourself a really good Gynecologist …..preferably female!! We’ve always lived in Las Vegas, Nevada. Our wonderful female Gynecologist understood my daughter’s issues & I believe she researched much to learn what she didn’t know. Do your research Beth in finding the best doctor in your area! If you haven’t seen a good Fertility Specialist I suggest you think about that too but again, do your research. There is a good doctor waiting out there to help you.
Our granddaughter is 18 now and she is also afflicted with both PCOS and Endometriosis like her mother and I’ve cried about it and I pray about it. She also had terrible cystic acne until age 17 but doesn’t today and I believe it cleared up when she was put on birth control meds to see if it could help.
Once our daughter was diagnosed at age 21 I realized that 3 of my cousins also had the same issues! Nobody knows what causes either as far as we know but both are so common today.
I wish you the best of luck and I will keep you in my Prayers. Try not to let it get you down. Try to put it all in God’s hands.
Sharon
Dear Beth,
Although you mentioned your TSH I’m not sure whether it was also high or low. Myself, I’m hypothyroid which caused extreme problems throughout my life, specifically fertility issues. If I may let me encourage you if you aren’t satisfied with the endo you’ve seen to find another. The first endo I saw as an adult told me “you’re a fat lady looking for an excuse.” It was devastating because at the time I knew that my thyroid wasn’t working properly. My issues began when I was five or six years old which I understand is very early; most young women evidence around thirteen years.
But may I also tell you about the children of a friend who finally chose to look into adoption. They went after multiple IVFs failed to a Christian adoption weekend. The head of the program said to them all, “You’re thinking this is your Plan B, but I want to tell you this has always been God’s Plan A for you.” I certainly hope and pray that you will be able to carry a baby to term. That you will find the answers you seek. I want to encourage you to keep trusting Him who loves you best. Fondly, Jan
Hang in there Beth!! A friend of mine went through something similar and she found her help mostly through her fertility specialist. He got her testosterone level down to a level where they could start trying for children, and now she has 2 beautiful girls. I don’t know if this is your answer, but it might help to look into seeing one. God Bless you and Ryan! Keeping you both in my prayers!
Much Love and Blessings, Rebecca