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In Life with PH

On Monday of last week I received a phone call from my family doctor to let me know that I had to come in to talk about the results of my pelvic ultra sound, which I wrote about for an earlier column found here. I feared it might be the final nail in the coffin.

It is safe to say that I have become a bit of a professional patient since being diagnosed with pulmonary hypertension nearly three years ago. I have had enough tests done to know that they don’t bring you back into the office to discuss negative test results. I instantly knew that this meant something showed up.

I had to wait until Thursday to have my follow-up appointment to discuss the results of my pelvic exam. I’ve always been a bit of a worrywart, but after being diagnosed with pulmonary hypertension I turned into ‘Chicken Little.’ Sometimes it feels like the sky is falling, and it is hard for me not to feel that way. I’ve always suffered from anxiety and depression.

Throwing a rare disease into the mix has only heightened my senses. I often feel like my world is ending. When your chances of developing something like pulmonary hypertension are so rare, part of you always feels like the worst-case scenario in every situation. “It could happen again because it’s happened before,” whispers my shell-shocked brain.

As you can imagine, waiting a couple of days to find out my results was slightly torturous. It is safe to say that some worse case scenarios played out in my head, but I was eventually able to rationalize that my doctor would squeezed me in earlier if I had anything life threatening.

Trying to explain difficult periods to a male doctor is kind of a hard thing, which is why my symptoms were neglected for well over a decade. One of my pulmonary hypertension specialists got at mad me once for cancelling an appointment I had because I had my period. His receptionist understood, but he actually called me and scolded me like a child. He told me to take an Advil, which virtually does nothing for the pain. I also experience heavy bleeding, so sometimes I have to sleep during the day.

For me, a pulmonary hypertension appointment is kind of like doing a triathlon. I, like many other pulmonary hypertension patients, have to wake up early to wait hours in a depressing waiting room. Next we get to blow into a bunch of weird machines that look like they come from a Dr. Seuss book. Then we get to bust our asses during the six-minute walk test, trying to walk as briskly as possible and as far as possible. There is no way I could yield accurate results when I am in that much pain.

Ovary created by Picasso in cubist period?

Thursday finally rolled around. My family doctor explained that I have three issues. Individually, most of those ideas aren’t that big of deal, but because I have three abnormalities rolled together my reproductive organs are kind of a hot mess. Having pulmonary hypertension thrown into the mix only further complicates things.

I found out that it looks like Pablo Picasso put together my uterus during his cubist period. One ovary is in the wrong spot, and has a fairly large cyst. The other ovary has about three cysts. I have endometriosis, something I have long suspected and asked to be checked for. For any males who have made it this far into this column, endometriosis is pretty darn painful to the point where it can be debilitating. I also found out that my uterus has a septum. This is a lot to share with strangers on the internet, isn’t it?

Most of the hot mess that I have going on down there can be managed and/or fixed with surgery and birth control, but I am not a candidate for either. I went on birth control in my teen years to help with the horrible cramps I experienced. The side effects where so bad I had to get an MRI because doctors thought I had a brain tumor. I had to stop taking birth control, and have been too afraid to test the waters again. Surgery with pulmonary hypertension can sometimes be risky, so I decided against it.

The surgery would be to help remove the septum, which I found out would need to be removed if I ever wanted to get pregnant. Finding this out certainly picked at that open wound I have going on. Was I fated to never get pregnant? What if I had the surgery before I was diagnosed and then could never have children anyway? What if I never developed pulmonary hypertension and got pregnant without knowing about my “Ma Jolie” shape uterus? (That would have ended in a devastating disaster.) Why does it feel like I was destined to never have kids?

My family doctor tried to emphasize the fact that I wasn’t planning on having children anyways — but I was.

I took parenting in high school, and even took home one of those robot babies for extra credit. I worked in childcare centers. I got a specialization in teaching prep from the university. I was planning on having kids, but pulmonary hypertension is the one that decided I wouldn’t have them. Not me.

Of course, the optimist-hopeful-spirit in me that believes in unicorns and true love still hoped that maybe someday I could have kids. I’ve had the chance to speak to some women who have had children post diagnosis, and doctors are learning more and more about pregnancy among pulmonary hypertension patients. Part of me was still quietly holding out that maybe, one day, it would be possible for me.

Even though pulmonary hypertension decided for me that I wouldn’t have children, this extra nail in the old coffin still hurts emotionally and psychologically. I feel like I have been given one more obstacle that I didn’t really need because I haven’t even found my way through this one yet. Maybe I was fated not to have kids, maybe its just bad luck. I can only hope that maybe I am being pushed into a different path that I don’t understand yet. If that is the case, I hope that path is surrounded by sunshine, maple trees in the autumn, and Boston terriers.

Note: Pulmonary Hypertension News  is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.

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Serena Lawrence graduated from the University of Waterloo 2012 where she earned an honours degree in Fine Arts. After she was diagnosed with Pulmonary Hypertension in 2013 she started the blog called The PHight or Flight Project where she began freelance writing and curating guest writer content. Serena enjoys a good cup of tea, little adventures and her Boston Terrier named Sammy.
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  1. Maureen Puddle says:

    Dear Serena,
    I love your willingness to share the depths of this journey you are on! Your honesty in speaking and sharing about what is happening and the pain you are in. Thank you. I can’t begin to understand it, but I want you too know I want to hear and be alongside in some small way, even if I can’t walk in your shoes.
    I am not married nor do I have children and am much older than you. Right now they are investigating whether I may have Pulmonary Hypertension, or maybe an Interstitial Lung disease or whatever is causing the low DLCO and shortness of breath on exertion, but so far have not come up with much. But back to the journey! No kids cause it was my choice not to go along that path unless I found the right man for me which didn’t happen. But I have had many of my siblings kids around on and off and worked for a time in Africa in a Children’s center for homeless kids. About 400 of them from babies many with HIV aids up to 18 year olds. My that was a big experience too say the least but I became a mum to several boys who desperately needed that and who are grown and married now with their own children and who still call me mum. I am not saying this in anyway can bring hope to you right now but I just wanted you too know my story and know I am believing and praying for you to find that sunshine path you spoke of because I am sure its out there for you even in the midst of all you are experiencing. I see you in all you are going through as a warrior of sorts because you share your lows and difficulties don’t give up and in that help many who can’t give voice to theirs. Blessings and know I read your posts regularly and you help me and I pray for you Thanks!

    • Thank you for walking along side me throughout this journey, and thank you for sharing a bit about your journey with me. I hope you can get some answers soon, I understand how frustrating it can be to not have any concrete answers. I am glad to hear that you have been able able to work so closely with children, and even help raise a few! I worked with several foster children who had special needs. I found it so rewarding, and learned so much from them! They had such beautiful spirits, and I even picked up some basic sign language to communicate with them better.

      Thank you so much for all of the kind words and well wishes. Please know that I am wishing you all the best, and hope that you can find some answers soon.

  2. DMH says:

    Don’t dispair. Life has a funny way of changing things down the line.
    I had a very large cyst on my ovary, so it and the ovary were removed. He discovered that I had a bicornate uterus, with one half being completely deformed. The doctor said, you’re probably going to have a hard time getting pregnant, if you want kids I’d start soon. We did. I was pregnant almost immediately. It was not a great pregnancy (perhaps the precurser to the up coming blood clots I would soon sufferer from) but the biggest issue was that the baby was breach and the birth canal so small he’d never drop into the last stages of childbirth, so no natural childbirth for me. So we planned the c-section. My son did have problems when he was born which he outgrew by the age of two. During this time who knows what was going on but the clots started for me. grrr
    But my point is, the doctor really didn’t know what he was talking about. Sometimes mother nature takes care of those things.
    I feel for you and can understand your angst in this. hugs

    • I am glad to hear that you were able to get pregnant. It sounds like it was a difficult pregnancy, but I am glad to hear that your son is doing better now. I am sorry to hear that you developed clots after. I hope that you and your family are doing well. Thanks for sharing a bit about your pregnancy with me. Best wishes!

  3. Pia says:

    Hey Serena!

    I’m sorry you have had so insensitive doctors. Thank you for sharing your story and being so honest.
    I was born with complex CHD and have endured several open heart surgeries and emergency surgery and will need more. I was never really told that kids wouldn’t be an option for me. As long as I can remember I have dreamed of being a mom. I had my plan to study find a good work and have kids. My dream is 4 kids.
    A couple years back when I switched to my adult chd specialist and he said I shouldn’t have kids I felt like I lost my ground. And still I was going to have kids in my mind. And the cardiologist doesn’t know everything he is old there is much more research and knowledge on this than there was right? that is what I was thinking and brushed it off. My surgeon from a year ago an optimistic talented man told me when I had to choose between heart valves I could have kids with either. So I was very hopeful and thinking I will feel so much better after surgery and finish uni in a couple years and then go after my plan. I did feel a lot better afterwards but that didn’t last long. A couple months ago I was in rehab and the doctor who was basically the boss there did my echo and said to me “you do know pregnancy is nothing to be considered for you”. Again a slap in the face. While I was there it was discovered that I have high pressures in my pulmonary arteries which is CHD related but they seem to have doubled within two years but my cardiologist doesn’t believe this to be true so I guess I’m on the long way of probably being diagnosed with PAH. As someone who wants to know everything I did tons of research and my dream has shattered to pieces when I read about PAH and pregnancy.
    I assume a complex anatomy, a far from normal heart and high pressures are a terrible combination. And considering how bad I’m feeling right now I wouldn’t even make it through pregnancy, let alone be able to care for a newborn. I would have to feel so much better than I ever have which is unlikely.
    It is so frustrating and painful and many don’t understand why I’m crying about not having kids. It also hurts when you have friends that are pregnant and having kids. And I ask myself why am I supposed to not have kids myself.
    My boyfriend said when I had one of my breakdowns to me “maybe we are supposed to give a child a family that doesn’t have one”. This is what keeps me going. I have learned to take things as they are and that they happen for a reason, so maybe giving a child without a family one is how it is supposed to be for me.

    Much love from Europe ❤️

    • Hi Pia!

      Thank you so much for sharing so much of what you have gone through with me. Although this experience is very painful, it is always comforting to be able to connect with other people who can understand that explainable loss. It sounds like you have gone through a very difficult experience as well, and I am sorry to hear that. I hope that you are able to get a proper diagnosis and treatment soon so you can be on your way to hopefully feeling better! It sounds like your boyfriend is very supportive (I like his thinking!) I hope that your dreams can come true, even if you have to take a different path to get there.

  4. When I found this post on my FB news feed I was blown away. I have always felt alone battling my endometriosis and PH. I was diagnosed with endo ten painful years ago and PH four years ago.
    I remember being an inpatient when my PH diagnosis was confirmed and a PH consultant told me having children was out of the question. Despite his heavy handed approach to my fertility, I took this to heart and accepted I would never even attempt pregnancy.
    I have had surgery with my PH three years ago. I was admitted early for an iloprost infusion and had to go to HDU after surgery. I was an inpatient for ten days for what would have been day case surgery for any other patient without PH. They couldn’t get to or drain the cyst I have on my left ovary. I had an interventional radiologist drain the cyst under ultrasound guidance a year later.
    I have always felt like the aneasthetist and PH doctors felt I was making a fuss about the pain I suffered and still don’t appreciate how much pain my endo causes me despite my mirena coil.

    • Thank you so much for sharing a bit about your experience of living with PH and endo. I’ve heard from so many women now who suffer from very painful endo symptoms, all of who had their symptoms ignored for years. I am sorry to hear that your doctors made you feel like your pain and symptoms didn’t matter. I’ve learned that sometimes it can be hard to explain that kind of pain and have it taken seriously.

      • Kathy LeCompte says:

        I’m sorry to hear of all the difficulties you’re having, but I feel the need to tell you I have PH and brought three beautiful sons
        into the world, not all at once though. They are now 43, 42 and 40. I also have a friend whose uterus has a septal division
        as well (she told me the medical term, but I’ve forgotten it) and
        she had a baby girl many years ago. I also have a congenital
        heart defect ( a hole in the septum between the chambers. Unfortunately, no one knew this when I was born, hence it has never been corrected. I do have heart failure now to some degree, have been on SS disability for many years. I try to live each day to the fullest, and have no regrets, because it wouldn’t help. I also had a hysterectomy at 23, but thats another chapter. I hope some sunshine comes into your life, it can’t be easy for you.

        • Hi Kathy,

          Thanks for sharing a bit about yourself with me. I am glad to hear that you were able to bring three children into this world, and even better, watch them grow up! I am glad to hear you try to live each day to the fullest despite everything (I know how challenging that can be some days.) Thank you for the kind words. Wishing you all the best!

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