When becoming a mother gives you Sheehan Syndrome: My Story!
I always wanted to be a mother, In fact, it's one thing I dreamed of for many years. If I could I would have more children, John and I would love to adopt. Motherhood to me is the greatest role I could ever have. However for me becoming a mother came at a price and that price was Sheehan Syndrome - damage to the pituitary part of the brain!
A Long Labour
I had 3-day labour. I've never talked about birth before. Just thinking about it gives me a sickening feeling inside. I guess I'm still not over it 9 years later. Thinking about labour gives me some level of PTSD for sure and so I do avoid it whenever I can.
However, my experience was one of joy, pain and long term brain damage. So what happened? Well, during pregnancy I had a few serious issues and eventually, after a long labour, I developed Sheehan Syndrome, alongside other conditions. Here is the story of what happened.
A Car Crash Whilst Pregnant
The first being a car crash, Whilst driving we were in a car crash. Someone backed into us. He did not have any wing mirrors and his car was illegal. I ended up bleeding and was taken to the hospital.
I was lucky my baby survived the crash. I stayed in the hospital for a while until I was well enough to return home. However, I was constantly unwell.
Bed Rest During Pregnancy
I developed gestational diabetes and later Cholostasis in pregnancy. I had itchy skin, my liver levels were out of wack and all I remember is the Doctor at the hospital saying, "there is a chance of stillbirth". It freaked me out and caused a great deal of anxiety. I also had to have a lot of bed rest during pregnancy due to all the complications.
Whilst being on bed rest in the hospital I stayed in a ward with other pregnant Mothers who were also too unwell to be at home. Every few hours Nurses would come and check my blood pressure and monitor my babies heartbeat.
There were quite a few mums to be stuck on the ward and we had craft sessions where we knitted little booties for our babies.
There were also mums on the ward who had lost their babies. It was something you kind of knew was happening and it made me feel sad and guilty.
I was sad for the mothers who were stricken with heartache and felt guilty that my baby was still alive. I didn't want to talk about the pregnancy or talk about how excited I was out of fear of upsetting some very grief-stricken women.
Yet at the same time, I was excited and I was also nervous and scared that I may have the same fate. I managed to keep my baby inside for most of the pregnancy and then at 36 weeks I was induced. Sylvia could no longer stay inside and they felt she needed to come out.
Getting Induced
Getting induced was for me a horrible experience. Within an hour of having medication, I was in severe pain. It was a pain I had never felt before, (obviously) and it lasted 3 days.
I remember crying on the first night and begging for pain relief. I was given an injection but it really didn't do much to help. I was given gas and air and after 48 hours I was finally given an epidural.
At the time I had no idea what was going on but I now realise the epidural didn't work because I was in so much pain and apparently I shouldn't have been able to feel it but I certainly did.
I became unwell during labour. I had three drips including one in my foot. I became severely dehydrated and kept vomiting from the pain.
On day three the Doctor came to see me and said they would prepare me for a C-section. However, 5 minutes later the plans changed. I was suddenly ready to push my baby out and my beautiful Sylvia was born at 2 am in the morning.
Once Sylvia was born I had cuddles. She was then taken and dressed and I was told to go get in the shower. I did as I was told. I didn't know any better.
What Is the Cause of Sheehan Syndrome?
The midwife sent my husband with me and I stood up and walked to the shower. Now if my epidural had worked I don't think I would have been able to walk into the shower. I really don't know.
While in the shower I suddenly lost a lot of blood. I freaked out and my husband at the time went and told the midwife that I had lots of blood coming out. The Midwife told my husband it was normal, but she never came to look. She was tired after such a long labour.
I became really unwell and was physically sick for many weeks after my daughter's birth. I did not know that losing the blood after having Sylvia had caused any damage but it did.
It caused something called Sheehan Syndrome. One of the initial symptoms of Sheehan syndrome is being unable to make breast milk. I couldn't feed my baby and despite desperately trying I ended up exhausted and back in hospital as I had no milk to give.
What Is Sheehan Syndrome?
Sheehan's happens when the brain is deprived of oxygen resulting in damage to the pituitary gland. My pituitary was damaged and started to fail.
For the first few months and years of my child's life I repeatedly went to the Doctors telling them about my symptoms, the pain I was in, the fatigue. the exhaustion.
Each time I was dismissed and told I must have fibromyalgia or chronic fatigue. I had assessments done but my health never improved. In fact, it was not until 2013 when I collapsed due to an Adrenal crisis that my diagnosis journey began.
Adrenal Insufficiency can be caused by two things, failure of the adrenal glands or failure of the pituitary resulting in secondary failure of the adrenal glands.
Apparently, when a Mother gets Sheehan's it can take years to diagnose. Failure of the pituitary gland to work and diagnosis requires specialist tests, brain scans and so forth and so for me, the real tests began in 2013, 5 Years after giving birth to my child. It can sometimes take even longer to get diagnosed so I am glad I found out when I did.
It was not until 2015 that I finally got a firm diagnosis. I had Sheehan's due to giving birth resulting in hypopituitarism. The Pituitary gland is such an important part of the endocrine system.
Pituitary Gland Damage
There is an anterior and posterior pituitary. The pituitary sends hormones to the adrenal glands, the thyroid and releases human growth hormone into the bloodstream. It also controls sex hormones, prolactin for making milk and affects periods and body temperature.
By 2015, I had started treatment for Adrenal Insufficiency and Human Growth Hormone Deficiency. I now have an adrenal pump which pumps cortisol medication into my bloodstream 24 hours a day.
This does the job that the Pituitary no longer does. I also have a nightly injection of human growth hormone. I need these medications for the rest of my life.
Without human growth hormone, my temperature would be up and down like a yo-yo (like it used to be). I would have severe headaches and a weak body to the point I would be constantly in a wheelchair and bed bound.
Without the Cortisol medication, I would die.
Adrenal Insufficiency Diagnosis
I need constant round the clock medication and if I miss a dose or my body is under more stress due to an infection, a shock, surprise or illness then I need to increase my medication to avoid adrenal crisis and death.
That is the reality of it, no cortisol results in death.
I have been using an adrenal pump for one year now and have been on growth hormone for two years. I will always have fatigue to some extent and have to vigilantly monitor my cortisol levels throughout each day to avoid a medical emergency.
I can no longer work in my previous profession as a teacher. I can't do all a Mother usually does physically, however, I have adapted and we have made adjustments so I can give my daughter the time she needs in different ways.
I also found blogging. I can sit in bed and blog. I can sit on the sofa and blog. I can go on social media, make printables, take photos and be a professional blogger from my own home.
Blogging gives me an additional purpose alongside motherhood. It allows me to give my daughter opportunities I could not have otherwise and allows me to speak about my health condition.
I can share inspiring content to help others. I can write about how life really is and when I need to rest take a break and rest, I can do. You can't do that in a 9-5 job.
Hypopituitarism Diagnosis
So that is my story. Giving birth gave me Sheehan's. I have an official diagnosis and it is Sheehan's resulting in hypopituitarism resulting in Human Growth Hormone Deficiency and Secondary Adrenal Insufficiency.
I also have chronically low Iron, low Vitamin D, B12, Folate and Zinc. I am always working on these and trying to get the best vitamins into my body I can.
I now have regular Iron infusions and B12 injections and am finally in a place where although I am chronically unwell I am able to do all I need as a Mother with support from my husband.
I am still fighting the NHS to get them funded, for now, I pay for it privately.
It is a huge expense for me but I've stayed out of the hospital for a whole year compared to 22 stays before the pump and that saves the NHS hundreds of thousands. It also means I can spend more time with my daughter as a mother.
My health has been as stable as it can be for a year now and I hope one day I can have a second child, however, I am not able to do this naturally, It would have to be through adoption but that is a whole other story.
I love being a mother and despite my illness having Sylvia is the best thing that ever happened to me. She is my happiness, my joy, my silver lining and I would do it all over again just to have her in my life.
It is a heavy price to pay to become a mother but a price I accept and one I am learning to live with.
Angela x
About Angela Milnes
Angela Milnes is a Qualified Early Years Teacher who has specialised in Preschool and Kindergarten teaching. She has a wealth of experience teaching young children and is passionate about kids crafts and having fun as a family. Angela has also taught cooking skills and loves to share both family recipes and easy instant pot recipes here on The Inspiration Edit. Follow her on Pinterest!
It's good that you got a diagnosis, we went through a similar period with our daughter trying to find out what the problem was. Thanks for sharing your story.
Thanks. Some conditions can take years to diagnose... especially when the doctor just says your being anxious and over worrying ... I kept trying to get help and I got my diagnosis on paper when my daughter was 7.
I'm not planning on having children but I had no idea such a thing could happen - thanks for sharing and opening my eyes! I'm also baffled about how long it took for you to get diagnosed. I know they do their best, but you'd think doctors would have figured it out sooner.
It would have been good to get treatment straight away but I am glad I got to this point!
Angela! You need to write a book! Bleeding hell. You have been through so much in your life you sure have a story to tell x
Your right! I have a huge story to share! It's a crazy one but that's what everyone who knows me say... write a book! There is so much to share!
I have not had a child myself but can only begin to imagine what you have and are going through. You should be proud of yourself. Continue to be strong hun :)x
Thanks. I have come a long way since Sylvia was born and it has been a bumpy ride.
Goodness me, obviously I knew you were ill but what an awful thing to happen. I had no idea this could happen - the more I learn about pregnancy and labour over the years since giving birth, the more I realise that so many things can go wrong. I'm glad you finally got the diagnosis and I really hope you manage to get the NHS to fund your medication.
Thanks Lisa, Getting fully funded would really help. A year of medication is cheaper than 2 or 3 ambulance trips so it is so worth it... i hope to get funded eventually.
Oh my, I'm so sorry you had to go through all that! I'm so happy to know your child was born healthy thought - and still is!
Kayleigh x
Yes that's the most important thing that Sylvia is healthy! I can cope with being unwell myself and would be sick forever if she could just stay healthy that would be great!
I'm so sorry to hear that you had such a stressful childbirth and I'm appalled to hear about the car accident and the fact that the nurse didn't come to check up on you afterwards! I'm shocked it took so long to diagnose but wish you the best for the future now that you know how to deal with it!
That's the key to this, I've got the right medication and learning to manage the condition now....and be a great mum in the process.
Oh my god this sounds awful, I am so sorry you had to go through all of this. I am glad you were finally able to get a diagnosis but it's horrendous that your pain relief didn't work. x
Yes... It was not good at the time and has taken a long time to feel ready to talk about it!
Wow, what a lot you have been through! I'm glad that you have found that writing and blogging gives you an additional purpose alongside motherhood now, thanks for sharing your story so openly x
Your welcome. I have been through some difficulties but coming out on top now! I think the key is learning to live with limitations and be happy anyway!
Gosh - what an ordeal and how brave of you to share. I have not given birth and won't be as I have decided not to have children but thank you so much for sharing. Good luck in everything x
Your welcome. It is an individual decision and I understand some choose not to and some cannot even when they do want kids.
sorry to hear about this experience and you are brave. I do hope the nhs will fund it eventually. despite it all, you are a wonderful mother, inspirational!
Thanks Nicol. It's great people can see this!
Angela we are so sorry to hear what you have been through. Sounds awful and we hope you get the funding you need for the equipment. xx
One day I will but I have to fight for it!
That is such a sad story Angela, thanks for being brave to share! I am afraid that NHS with their limited funding and costs constraints are failing many of us! I was also in labour with my first for about 40 hours and first 20 managed without an epidural but was much luckier than you. Also natural labour is not that natural afterall it seems, I know have heard so many terrible petrifying stories, I am grateful every day we managed alive kids and I. Best of luck in your fight with NHS, perhaps you could get a lawyer who could support your cause from a dedicated charity ?
I applied twice for funding and was declined I need to apply again in a few months.
It is so heartbreaking to read that you had to go through so much! I am glad you were able to prevail everything. It is crazy that some people don't even think that their actions can change other peoples lives for forever! I am glad your daughter grew up to be beautiful --- that should at least make you know that a greater power is looking over you and your family.
Yes we are being looked after now!
I have never heard of this before and am so sorry you had a bad experience of pregnancy and birth. I hope your fight to get your pump funded works
Thanks. I am fighting for this!
Oh my goodness what an awful experience to have had to have gone through, I hope you manage to get your pump funded.
Yes I am still fighting for funding!
Oh no! It sounds like the medical team in the hospital you gave birth in, were totally uninterested and caused you so much suffer. I'm really sorry for all you've been through, but I know that having your beautiful daughter must be a real blessing to you!
They failed me big time and I am glad I got my daughter but wish I had gotten the right care.
I'm sorry for what you have gone through. I've never heard of this before. I'm very fortunate to not have any health conditions related to giving birth.
That is great. I would not wish this health condition upon anyone.
I've been reading more and more how the medical staff in first world countries are letting women down when it comes to care during labor, especially in the US. This should not have happened, and I'm really sorry.
Sometimes these things happen. It is a sad thing.
Thank you for sharing your story. It will be helpful to other people in order to find your strength to fight.
I sure do hope so.
My word sounds like you've been to hell and back. They say every cloud has a silver lining . Maybe in your case it's Sylvia 🙂
sHe is the silver lining for sure!
Oh my gosh, I'm so sorry you went through this. I can't even imagine. I did not go through something like this, so I don't even know what it's like. I'm so glad you got your daughter despite the issues!
yes i am glad I have Sylvia.
I had no idea about this! Thanks for sharing your experience and insights! I cannot imagine how you might have dealt with it. It is astonishing that it took SO LONG for you to get diagnosed.
❥ tanvii.com
It is sad it took so long... I could not breast feed as prolactin is affected by sheehans and they could have picked it up then but they never did!
Oh wow, you're very brave for sharing this. I admire bloggers that can share personal details about their life - especially because it might help others. I'm so sorry this happened, but I'm glad that you gave birth to a lovely little girl.
-Lauren
http://www.shootingstarsmag.net
Yes I do hope sharing my stories helps others. That is the purpose of sharing!
You have so many stories to share my dear! I never learned about this kind of experience before and this should be addressed especially to those expectant moms out there. Big hugs for you! Your little one is such a gift to you and your hubby.
I do have many stories and experiences to share! It is something which needs to be dealt with!
Oh My! That is a pretty harrowing experience to have lived through for both you and your baby. I am so sorry that happened and I had no idea it could happen. I'm so glad you and your daughter are still here with us. It's sad that they didn't diagnose you sooner.
it is sad and I hope lessons can be learned and people can be diagnosed sooner than I was.
This is my first time hearing of this disease but it be scary and worrisome. Sorry that you've been through all this. Glad Sylvia is born healthy. She's so pretty!
Thankyou. I am glad she is healthy.
I never heard of this. Thanks goodness you have your beautiful daughter. .......I have three daughters, my sister just finished read and explained that her sister on law is on the same situation.
Sorry to hear this!
I know your daughter is the light of your life and you couldn't imagine your life without her. I imagine that the hospital should have been held responsible for the mistreatment, at least I hope so. I'm very happy your daughter was born healthy and happy.
She sure is. i am pleased Sylvia was born healthy and just wish I could get the treatment I deserve on the NHS.
Thank you so much for sharing these private and deep memories with us. Thank the Lord that you and your baby is safe and healthy.
Your welcome. I am glad my daughter was safe and grew up healthy.
Oh Angela, that was such a difficult yet beautiful read. It must be good in a way to have the diagnosis but so hard knowing at the same time. You are such a strong person and I'm glad you've found blogging! xx
Thanks. I am glad I found this as it's my way of speaking about life and having a secondary purpose!
Wow - what an incredibly scary and long journey you've been through and are still going through. You clearly have so much strength and determination, it's inspiring 🙂
Thanks. I will keep fighting the fight!
This is the first time I am reading about this. Your post will help a lot of mothers. More power to you mama.
Thanks. I hope it does!
Like you I had a traumatic birth with my eldest - it took me years to realise I was suffering from birth trauma and PTSD, and it's only really now - nine years later - that I can think about the birth without feeling anxiety and dread. I'm sorry to hear that your health problems are continuing to this day. x
sorry to hear it. Sometimes when your in the moment and so unwell you have no idea what is going on.
Oh gosh what an awful thing to go through. I am so glad you have shared your journey, I am sure it will help lots of people x
Thanks Cathy. It was difficult and is a continual battle.
This is why our health care is so terrible, mums are not given enough support and dismissed when they know something is wrong. Then years later complications from the birth can arise. It saddens me that you have to be on so much medication but one thing is certain you were born to be a mother and you are a very good one at that x
Thanks Ana. I was born to be a mum that's for sure.
Oh my goodness Angela I have never read your full story before this is so terrible on so many accounts but the one amazing joy out of all of this if that you were able to fulfill your dream of being a mum. x
YES... and being a mum is fantastic.
Feeling kind of emotional right now, But all the same you have Sylvia.
i do and that is what's important!
I do and that is what is most important!
Very powerful meaning and inspiration. Thank you for all these strenhth
thanks
Gosh this gave me goosebumps, I have had a whole host of really horrific neurological issues since having Harry and they kept telling me it was CFS and fibromyalgia. Last year I saw an endocrinologist who was convinced it was related to the pituitary gland and yet left the practice before tests were done. The follow up rubbished the idea and although I was tested for Addisons, and negative, that was as far as it went. Someone mentioned this as a possibility to me the other week, I see my new consultant in October and will be asking for more information about it.
Oh I hope it's not but yes... giving birth can give a host of issues and it can take years to work out. Good luck seeing your specialist Laura. I hope you don't have this but also hope you get a diagnosis at some point.
I am so sorry this happened to you and that it took so long to diagnosis. What a traumatic experience from the moment of the accident. It is good of you to share this as it may help others too.
I hope it helps someone else in a similar situation! At least knowing about it means it can be ruled out for mothers in the same boat - looking for a diagnosis for neurological and endocrine issues.
You are such a strong woman. The very fact that you are sharing this story with us is a bold over right there. Thanks for inspiring us and battling all that life threw at you... and you have your girl always smiling at you, always there for you anyway. 🙂 Cheers!!
Thanks. I am glad I can share this and help others and raise awareness!
I am so sorry that you are having to deal with this type of an issue. I had never heard of this happening to anyone before while giving birth. You are a strong, brave woman. I'm glad that you joined the world of blogging - something you can do from home. I send many good wishes your way for healing, happiness and prosperity.
Thanks I am very happy now and learning to live with my difficulties.
Goodness you poor thing, you have been through so much!! Such a shame you are having to fight the NHS to get the pump 🙁 x
It is a shame and I do think they are letting me and my family down!
I am so sorry you had such a difficult pregnancy and labour, it must have been so difficult on you. It is great news that you are now getting the treatment you need. It is such a shame that it took so long though.
It is a shame and I think with more awareness people could be diagnosed earlier. Half the doctors and medics I have met did not even know about my condition.
Oh my gosh, you have been through so much. Sorry to hear what you have been though. It mush have been so difficult for you 🙁
Thankyou.
Oh my gosh you have been through it, must of been so difficult, and I am not surprised you struggle to talk about it.
It has been a rough journey 🙂 Still is but we are getting there.
Angela, thank you for sharing your story. I have identical twin daughters who have an adrenal insufficiency. As a mother with babies who suffer with this it was extremely horrifying. Whenever they got a stomach flu and couldn't keep medication down, I would have to give them their cortisol by injection. I almost lost both of my babies at 18 months because the pediatrician didn't fully understand the life-threatening disease. We dropped this doctor and pushed their endocrinologist to be their standing pediatrician. What a wonderful doctor he proved to be. In addition to adrenal insufficiency, both girls were afflicted with hyperthyroidism which made them extremely ill. Eventually, they had radiation treatment to cause damage to the the thyroid so it would flip to hypothyroidism. Because of this, weight issues from the adrenal insufficiency and hypothyroidism is a huge ordeal. Today, my girls are 29. They still struggle with weight issues which is difficult to see their pain. But, they are beautiful young women inside and out and my pride and joy.
Sorry to hear about this but I am glad they are doing well.
After 25 years of marriage, my husband divorced me and said my SS was the reason. He also used that reason to get custody - and he won