Pituitary Tumors and Hypopituitarism – Effects on Relationships and Marriage

 

I recently read an article that stated the current divorce rates are 55%.  For those with a chronic illness it increases to 75%.  I have not found a study specifically for those of us with Pituitary Tumors or that are Hypopituitary but I would have to assume we are in the 75% category.  A study completed in 2004 found that 1 in 2 Americans has a chronic condition.  This could be anything from Cancer, to Arthritis, migraines or extreme back pain.  That same study also estimates an increase in chronic illnesses of 1% per year to the year 2030.  If my math is correct that would mean that 50% plus another 16 years is 66% of people will have a chronic condition. Will that mean our divorce rates will jump to 91%?

I’m not gonna lie, I was in shock at the number even though I am currently going through the separation/divorce process.  That is 3 out of every 4!  When people get married, they hope that it is forever and the old words “in sickness and in health, till death do you part” come into my mind.  They should change the vows to “Only in Health, until sickness do you part”!

The problem I see from talking with so many Pit Tumor/Hypopit patients is some of them had obvious symptoms that effected their lives and relationships that they noticed right away but could not get a diagnosis.  Or the others where the tumor grew so gradually that the changes came without notice.  We attributed our pains and inability to function “normally” or as we used to as getting older until it became debilitating to some extreme.  In my case it came on gradually with a slow growing tumor.  I know of at least six years of misdiagnosis but really have no idea how many things were affected in me before that time.  What I hear for other patients is the minimization and disregard from partners, family, friends and coworkers for the condition.  Whether they believe we are faking the illness or exaggerating the symptoms for sympathy.  Yes there are those with tumors that will never know they have one so they have no symptoms.  Yes some will be found and cured. Yes some people will do well on medication and live a full life.  But there is a large amount of us that struggled to recover.  There are those that are still fighting, and some that will never fully recover.  Same is true for many other debilitating diseases so don’t minimize our illness.

The fact is; being seriously ill impairs our ability to do the things we used to do as a couple. Feelings like guilt, anger and the accompanying miscommunication then follow. When you lose your social and sexual partner as a result of a disability, it has a huge impact.  There’s a whole psychological layer. When you get married, it’s not to be somebody’s nurse, and then suddenly, you are somebody’s nurse. Financial problems only make the situation more difficult. A dual income home can quickly become a single or the higher income earner can longer support the family.  There are also the cost of healthcare as it rises, medication costs, increasing the tension at home and can further impact a relationship and push it over the edge.

I once discussed this with a wife of a chronically ill friend.  The truth was she knew she was being unfair, but she was lost, tired and burned out. She knew her husband was not to blame, but she didn’t know where else to direct her fear, anger and resentment.  So it unfortunately goes in the direction of the one person they used to know but don’t understand anymore. They see the shell of the person they used to love.  The strength they used to admire in their partner is no longer visible.

One of the stories I also heard was a couple where the wife became completely debilitated due to her illness. The husband did everything he could but because they had no insurance there came a point that he could no longer afford the care she needed.  He had to divorce her in order for the state to have to take over her care and he could survive financially.

So that means married people, like myself, diagnosed with a serious health condition may find themselves struggling with the impact of their disease while also experiencing the stress of separation and divorce, and financial implications that come with it. Studies have found that women are doubly vulnerable to the end of a relationship in the face of illness. Not only is divorce more common when women get sick, but women are also more likely to watch their husbands die first of a serious illness before divorce.  There are two theories to this; gender norms and social expectations about care giving may make it more difficult for men to provide care to ill spouses, and divorced men have more choices among prospective partners than divorced women. But another article stated more of these divorces are initialized by women.  What they found was when women become ill, and their husbands are not doing a very good job caring for them, they would rather that he just go it alone and they rely on friends and family who will take care of them.

A growing number of articles are now being written about the role social media is playing in divorce but not specifically those with chronic illnesses.  However, many of us with chronic illnesses find ourselves searching for cures, ways to help deal with symptoms and more often…other people with our illnesses that may understand how we feel and what we are going through.  There are Facebook and support groups where we can find that sympathy and support we may not be getting at home.  So our feelings are put out to strangers and we are vindicated.  We consider these connections friends and share personal thoughts with them instead of our loved ones that we get tired of explaining things to.  We start to value our worth based on followers, comments and messages and what we do to help others with our illness.  Unfortunately many drift away from the emotional and mental connections we have with the person or people right in front of us.  I truly understand the need for these connections. Would it not be better for us to dedicate and invest more time to teaching our family, friends and the public about our illness so future patients do not have to deal with the same stigma?

Now… in reference to the quote header that I posted with this blog; “Some individuals who claim never to have felt romantic love suffer from Hypopituitarism, a rare disease that doesn’t allow the person the feel the rapture of love.”  The quote refers to information in a book by John Money (1980) Love and Love Sickness: the Science of Sex, Gender Difference, and Pair-Bonding.  I will be totally honest and say I have not read this book yet but agree this could be possible if Hypopituitarism goes untreated. I have seen this quote before and have heard from patients that do find issues with social anxieties, bonding, making new friends and keeping existing relationships. There have been discussions that these may be caused by a possible Oxytocin deficiency, or deficiencies of Beta Endorphins. Both of these are not given to us in medical replacements even though they are linked to pituitary dysfunction (along with the estrogen and testosterone which we do replace). This post is not to debate those, only to suggest more studies certainly need to be done to find out if there is a link. Could these hormones be linked to why our relationships fail?  We all know in regular marriages the effects hormones can have.  Just look at menopause and what they call a mans menopause the “Mid Life Crisis”!  Both are hormone related.

I wish there was an answer.  I wish I could snap my fingers and change the reality of the marriage and relationship world today.  What I do want is you, the patient, to remember that you have value. Do not let your condition become who you are. Look in the mirror now and say “I am (insert your name), I am not my illness”. I am one of the lucky ones where my illness is close to being under control now.  Even though I am going through a divorce, there is a light at the end of the tunnel for me.  I have been dating and know there will be someone out there that will love the person that I am on the inside.

The same inside where my chronic illness lives.

 

 

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Author: kmuir2723

My journey started in February of 2008 when I was rushed to emergency with blinding pain in my head. I was taken by ambulance to have a CT scan and when it came back negative I was misdiagnosed with Ice Pick Migraines. Over the years I would return to emergency a few more times for the same issue and they would just treat it as a migraine because that is what they treated it as before. Since then my body and personality has been through many changes and many more misdiagnosis. From carpel tunnel, computer elbows, rheumatoid arthritis, Gluten Intolerance and erectile dysfunction just to name a few. My memory and concentration levels were getting fading. I had little to no energy most of the time and I was losing interest in things I used to enjoy. My social skills diminished and I struggled to be around groups of people without anxiety. When I could no longer function properly sexually I convinced my doctor to run more tests. The results showed an extremely low testosterone level. I thought to myself, no big issue, they make medication for that but my doctor chose to send me to an endocrinologist to find out why. In August of 2013 I met with my endocrinologist and after numerous tests a 4 cm Macroadenoma (pituitary tumor) was discovered. The tumor was putting pressure on my Pituitary gland which in essence shut down most of the hormones in my body. I no longer had a functional adrenal system. We will never know how long the tumor was growing but the neurosurgeon estimates up to 20 years. The MRI showed evidence of scare tissue formation on the tumor from previous hemorrhages over the years. Upon review of the 2008 CT scan he pointed out the quarter size tumor that was missed. The migraines I was having was actually pituitary apoplexy or hemorrhages. I was very lucky to be alive. The surgeon informed me they lost a patient on the table the day before for the same apoplexy. My tumor was removed transsphenoidally on Oct 7th. 2013. They could only remove about 80% of it because of the proximity to the carotid arteries and optic nerves. There is a high probability it will grow back and if so, Radiation therapy is our next weapon against it. My hormones may never return to being created naturally so I am on medications for Cortisol (Adrenal system), Thyroxine (Thyroid Gland), Testosterone, (Sex Glands) and Somatropin (Growth Hormone) eventually. Since my surgery I have become separated after 23 years. It was hard but this thing changed me as a person and I cant go back to who I was before, even if I could remember who that was. I also lost my best friend of 30 years to a brain Tumor in February. He was there for me during my rough time this year and I will miss him deeply. My goal now is to help others going through this challenge and help to educate people to fight our medical system for their health. Never assume no news is good news when you don't get results of test back from your doctor. Be your own advocate. My fight continues but every day is a blessing and I chose to live it happy.

8 thoughts on “Pituitary Tumors and Hypopituitarism – Effects on Relationships and Marriage”

  1. So tough to read this. Started dating a man with a RCC in November and the apathy is really hard to deal with. Any advice would be so grateful.

    1. Hi Jennifer. Thanks for your comment. Dealing with cancer is always a challenge for anyone. My question is since you started dating him is this a new syndrome or has he always been dealing with it? Has he discussed this with his oncologist? There is usually help through cancer support for emotional and psychological issues for cancer patients. More than there is for pituitary patients unfortunately.

  2. Thank you for the article. I believe Oxytocin has a huge responsibility in the relationships of people with hypopituitarism. I believe my first marriage ended because of my illness. Recently, I found a lab that tests for Oxytocin and was in fact found deficient. I took this info back to my endo and he prescribed a nasal spray compound. I should be getting it soon, I am very excited to try it after 16 years with the deficiency. I know of a few others on Oxytocin replacement therapy and they said it makes a huge difference. Just wanted you to have this new information.

    1. Hi Diane. Thanks for your comment. There has been recent literature that the nasal spray can actually penetrate the blood brain barrier which has been the biggest challenge with Oxytocin. They have not perfected the longevity of it yet though but many trials are in the works for different uses. Taken orally it seems to get destroyed by the enzymes in the gastrointestinal tract. Even directly infusing through IV works for inducing labor but this does not cross the blood brain barrier. The science just isn’t there yet. Hopefully soon.

  3. I recently came across this blog and I am so very grateful. Your story is almost identical to my husband. He did however also loose all the vision in his left eye and most of his vision in the right. This has been such an adjustment. His personality is so flat and he doesn’t understand humor. Jokes go right over his head and he will look at me and say “I don’t understand” it tears my heart out. He doesn’t remember the birth of our youngest daughter or the wedding of our oldest daughter ( who had Cancer the same time he was going through his surgery) So I can’t even share the pain I went through while caring for them both at the same time. I am losing patience with him and your blog is helping me to remember he can’t help himself. We have been married 32 years and he had his 3.5 x 3.5 tumor removed in Christmas of 2008. Thank you for reminding me …in sickness and health. Many blessings to you, I read this right when I was feeling I had reached my limit!

    1. Hi Karen. If you need to chat about things please let me know. I don’t know what hormones have been replaced or where he is in his health but there are ways to improve if he chooses to. I can also talk to him. Let me know. You can find me on Facebook in the Hypopituitarism support group or direct message me.

      1. Thank you so much for letting me know. It would be so helpful to talk with someone that really gets it. We chose to just not talk about it much with other people because…well I am sure you know…they just don’t get it. When a family member or friend says he looks like he is doing great, ugh …I just want to choke someone!

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