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Hysterectomy and Brain Health

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Studies abound showing how the endogenous estrogens, estradiol mainly, improve memory and other cognitive functions. New research demonstrates there is an even more basic connection between the female reproductive organs – the uterus and ovaries – and the brain. The monthly menstrual cycle may control iron levels in body and also in the brain. Women who have a hysterectomy before reaching natural menopause may be at higher risk of neurodegenerative diseases such as Azheimer’s and Parkinson’s due to the increased peripheral and brain iron levels post hysterectomy.

Iron and Brain Health

Iron is an essential element for health. Both iron deficiency and excess are associated with brain pathology. In the developing brain, too little iron causes neurological impairment with significant cognitive and neuromuscular deficits. As we age, iron accumulation in the brain is also problematic and linked to neurodegenertive disorders. In part because women menstruate, they have naturally lower levels of peripheral (body) iron than men. Researchers believe that the menstrual flushing of excess iron may be in part responsible for delaying the brain iron accumulation that has been linked to early Alzheimer’s and Parkinson’s in men.

In a study published in the journal Neurobiology of Aging, researchers investigated what effect premenopausal hysterectomy had on brain iron levels. From a sample (n = 93) of healthy older, male and female volunteers, ages 47-80 years, researchers used a specialized MRI to image brain iron levels.

What they found was quite interesting. Women who had hysterectomy before reaching natural menopause had significantly higher iron levels in the white matter of the frontal cortex compared to women who reached menopause naturally. The hysterectomy group, also had higher iron levels in the other brain regions tested but those differences were not large enough to reach statistical significance. Brain iron levels in the hysterectomy group were similar to those of men, who have naturally higher iron levels in the brain and who often succumb to the neurodegenerative diseases at a much earlier age. The researchers speculated that the observed white matter iron accumulation could be a precusor to the grey matter iron accumulation observed in neurodegenerative diseases such as Alzheimer’s and Parkinson’s.

Brain Basics

White matter in the brain consists of the oligodendrocytes – a type of cell that forms what is called the myelin sheath. Myelin is the insulation that protects the axons of the neuron (in the brain) or nerve (in the body) to allow rapid conduction or messaging across the brain or to the body.  Myelin is like the plastic coating around the electrical wiring in your house. If the coating is too thick, conduction is blocked. If the coating is frayed or too thin, electrical sparks fly everywhere. Iron is a critical component of healthy myelin, too much or too little impairs signal conduction – brain messaging.

neuron

Grey matter, on the other hand, is where the unmyelinated portion of neurons – the dendrites and cell bodies – are located. These are brain regions responsible for learning, memory, emotion, sensory perception and motor control. Cells in this part of the brain rely on chemical signaling to translate information. After the dendrite receives and the cell body translates a message, it sends the signal down the myelinated axon to its target.  Iron accumulation, either in the white or grey matter would impact brain function. Iron accumulation specifically in the frontal white matter region would impact all higher order cognitive function.

What This Means

The research is still in its early stages. An observed connection between menstrual blood loss and peripheral or brain iron stores though apparent, may not represent the total picture. It is quite likely that hormones associated with reproductive health, altered by the hysterectomy, also play a role in iron regulation.  Initial research connecting the hyperandrogenic and metabolically dysregulated state of women with PCOS is  associated with increased iron stores, as is general and cancer related inflammation, and genetics. Nevertheless, this study speaks to the critical need for more research about the long-term consequences of hysterectomy. Reproductive hormones regulate more than just reproduction. Removing the organs that synthesize these hormones has health consequences far beyond reproduction. It’s high time we begin addressing this.

If you have had a hysterectomy, be sure to take The Hysterectomy Survey.

Author’s note:  I would like to thank David Wiseman Ph.D., M.R.Pharm.S.
Founder, International Adhesions Society (IAS) for introducing me to this exciting new research.

Wish Me Well – Hysterectomy Looming

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As I embark on my surgery in a couple of days, I have come to terms with the fact that I could possibly wake up with the hysterectomy I have wanted for 5 years. I will not know for sure if the doctor will do the hysterectomy, as she is not willing to do the procedure unless there are complications. Is it bad to wish for complications? I want it all out. I have weighed the pros and cons. I know the hysterectomy provides only a 50/50 chance of getting better, but I am done with this disease.  Fifteen years of suffering with endometriosis is enough.

I am afraid of what will happen to my hormones after the hysterectomy.  I am not quite prepared for the wrath of raging hormones.  Maybe I will just wake up with the tubes and left ovary gone.  Maybe I am not yet facing the reality of what may come. I have begged and pleaded for a hysterectomy for so many years, but for some reason they would not do it.  My doctor wants to try removing my tubes first and my left ovary to see what happens. I guess she is right. I should try this surgery one more time because my first surgery was so successful, in 2007.  If it wasn’t for the post-surgery pelvic inflammatory disease that wreaked havoc on my insides, maybe I would be feeling better now.

I just don’t want to have another surgery after this. After this I am done and that is why deep inside I hope she removes everything.

This is a difficult decision to make, probably just as difficult as having to pull the plug on someone you know is not going to make it. You sit there with that thought in your mind “What if?” It is one of the most serious decisions of my life. I can’t take it back if it all goes wrong. I have to live with it.

The truth is, all the side effects don’t matter to me right now at all. I don’t want my woman parts anymore. I don’t want to have to go back and forth for all the tests only to end in tears and to be rejected my doctors who show no empathy when it comes to the survival of this disease. This choice is my decision to make mine and mine alone. I have listened to so many people and read so many stories but, in the end, I am sick of the cycle, sick of this disease, sick of the drugs, and just sick and tired of being sick and tired.

If she does not remove everything and I have no relief after this surgery, I will be looking for a surgeon that will remove it. I am 100% sure about this. I wasn’t sure before.

Thank you everyone who posted their thoughts, encouragement and concerns.  I took them all in and made my decision. I just needed to be at peace with it. I am now.  Wish me well. I will post again after the surgery.

My surgery is scheduled for February 28th.

Hysterectomy or Not – Angela’s Endometriosis Update

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Well the time has come and I will be undergoing my second surgery for Endometriosis and PID damage February 28th – a hysterectomy.

My health has been alright, all things considering. My husband and I haven’t been intimate for a while as it’s extremely painful to have sex and the medication I am currently on (Cymbalta) has lowered my sex drive almost to nothing. If we do have sex it takes extremely long to orgasm and sometimes I just can’t at all. That is very frustrating.

I haven’t had too much pain lately in my pelvic area and that is making me nervous.  It makes me think that I should hold off on the surgery. However my bladder and bowels are bad and I need that looked at for sure. I feel a lot of scar tissue up near my liver and diaphragm where the endometriosis was before, so I am pretty sure the scar tissue is just all over the place.

The surgeon is making me extremely nervous. Her last words to me were “I am going to take your tubes and your left ovary, if there are complications I will open you up and take it all out.”  When she said that, I just sat there. I couldn’t get any words out. I have asked for a hysterectomy so many times before, but have been refused. Now I am not prepared if she does one. I am more confused than ever.

I have researched hysterectomies and endometriosis for five years. I told myself that when I turned 35, if my endometriosis and all of the other issues were still here, I would have a hysterectomy. Well, I am 36 in June and no matter how much I have researched having a hysterectomy, I am still on the fence. Should I have a hysterectomy or not? There are so many complications and I wonder if a majority of my endometriosis is on my bladder and bowels what good would the hysterectomy do?

I had high grade cells removed from my cervix last year. Were these endometriosis lesions? Has anyone ever heard of this?  All in all, I want my uterus and cervix out. I am not planning on having another baby and at this point it is safe to say I am infertile due to the shape of my uterus and the damage done to my tubes from PID.

I get depressed thinking about how long it will be for me to go into menopause naturally and what if that doesn’t even help then? Yes, at 36 I want to go into menopause. I want the pain to stop.

This disease is terrible. I wonder what would have happened if they caught it when I first started to have symptoms. Would I have this many complications? Would I have the excessive damage of the deep infiltrating endometriosis that they removed with my last surgery? Would I have the nerve damage that I have now? Would my bowels and bladder be in better condition? There are so many questions, but I will never have the answers to them.

I think that if my bowel and bladder symptoms were not as bad, I wouldn’t be in so much pain. I wonder if the excision surgery removed all the endo and if the pain I have is from endometriosis or something else. I will soon find out. I think there is huge damage from the PID along with massive scar tissue that has obstructed or intertwined with my bowels, ureter and bladder. As for now, I can only sit and wait to see what happens. I go for my pre-op on February 20th so I can ask more questions then.

What do you guys think? What would you do if you were in my shoes? Hysterectomy or not?

 

Forty Years of Pain and Still No Diagnosis

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I am Louise Heiner-van Dalen, 63 years old. I live with my husband André in Elim, a little village in the east of the Netherlands.

The Pain of Puberty

From the moment my periods started at age 15,  I had a lot of cramps and stomach pain. I went to the practitioner, and he did screenings of my blood and urine. Nothing was found. This was in 1964. The doctor told my mother that I was making it up to get attention. So my mother and my younger sister started telling me that they were strong and never complained, while I was weak and always had something to complain about.

Every two weeks I had a lot of pain, and I felt so bad; I really was ill. My mother and sister started to call me names and to tell everybody how childish I was.

Miscarriages and Endometriosis

I got married in my 25th year, and after two years, in 1976, we really wanted to get pregnant. In those years I lost two ‘babies’ during the first part of pregnancy.

We went to the gynecologist and examinations started. Fertility examinations did not seem to be possible for some reason, and in those years the only option was a diagnostic laparoscopy. Then they found that there was a kind of flap mechanism, which was why they couldn’t do the first examination.

During this surgery they also saw that there was a lot of endometriosis in the abdomen. They had to tap off a lot of infection. When I woke up the doctor told me it was impossible to get pregnant because the ovaries were shriveled up by the endometriosis.

He gave me medicines that should have stopped my periods for a longer time, but after a couple of months enormous bleeding started. I was not able to take a step because of the bleeding and there was no way to stop it.

My husband and I talked about it, and with pain in our hearts we decided to that I should have surgery to take out my uterus and ovaries. We were afraid that going on like this could cost me my life, and I didn’t like to live like this. I was only 29 years old, it was 1978.

Hysterectomy

After we talked with our practitioner and with the gynecologist, my surgery was planned. The gynecologist told us that they would inspect everything, and it maybe it would be possible the take out the endometriosis and to keep the uterus.

When I woke up after surgery, I felt the incision with my hand, and it felt empty. I knew. In those years, the gynecologist thought that leaving a tiny little piece of one the ovaries would be enough to prevent problems with estrogen hormones.

Post-Surgery- Cycles of Pain

I could no longer have children. We planned on adopting before we got married, so we started the process before my surgery. In the mean time, I didn’t feel well, but it was hard to tell what it was. My muscles and joints started to give problems, and I had a lot of headaches. Every four weeks I had several days of physical discomfort and mental instability.

In 1980, we adopted our first baby boy and we were so happy, but I was still in pain.The doctors kept on telling me that I needed medicines because of mental problems. I refused that, because I was sure that there were other problems. The abdominal pain returned. Another gynecologist did a laparoscopic examination again, and again he found endometriosis and a few chocolate cysts.

Our second baby boy came in 1981. The gynecologist monitored my condition.

Premarin, Other Hormones and Psychosis

In 1992, after another surgery, doctors conducted an intra-uterine inspection and discovered that my mucus membranes were very thin and sometimes bleeding. He decided to give me Premarin, an estrogen hormone.

In a short time, I felt better than ever before. We were so happy and the gynecologist told me that I had to take this for the rest of my life. But then more and more the doctors found out that using this medicine could cause a greater risk of developing breast cancer.

Because of my husband’s job we had to move every four years or so. This meant every four years I had to find a new house doctor. In 2004, our new house doctor forced me to stop the Premarin. I refused. Then he refused to give me a new prescription. Day by day, my situation got worse. There were signs of psychosis. I had a lot of pain in my legs and seven nightly perspiration in 15 minutes, so I never slept. We asked the doctor to send me to an endocrinologist, but he refused saying it was all mental problems and I had to see a psychiatrist. I refused, and my husband went to the doctor to tell him that he wouldn’t leave before he had a referral letter for the endocrinologist. The doctor gave him the letter, and my husband told him that we would never come back to him.

The endocrinologist agreed with my need for the medicines. He did screenings of my blood and wanted to monitor my progress. We had to find another practitioner.

Prescription Mishap – Pseudo Pregnancy and Leg Pain

In 2010, I planned to travel to Québec, so I took my new prescription for Dagynil, a hormone, to the pharmacy four weeks before I left. I told them that it was important to have them in time.

Shortly before leaving, my husband went to the pharmacist to get my Dagynil, but they didn’t have to correct dosage by mg. They gave him a splitter and told him that I could simply split the tablet. I always thought that it was not good to split this kind of medicines, but the pharmacist said it was safe.

During my stay in Québec, I felt more and more sick, especially in the morning, with nausea, and my daughter-in-law joked that I seemed pregnant. After the month long trip, I came home and a week later I felt another psychotic attack coming. I knew for sure that the pharmacist and the house doctor had made an enormous mistake.

My husband called for the doctor, and he didn’t believe us! I had so much pain in my legs, I felt so bad, and was really panicking. I asked the doctor to make a phone call to the endocrinologist, but he refused. Again the same story!

It took three weeks; by then I was so upset that I started to shout at the doctor as soon he entered my room. I lived in a strange world that wasn’t mine. I wanted to die to be with the two little babies I had lost. It was horrible. I kept on shouting at the doctor, and he was trying to make a phone call for a psychiatrist.

My husband told the doctor that it would be better to make a phone call to the endocrinologist. Finally he agreed, and the next morning he made a phone call to us to tell us that we had to go to the hospital immediately. Thank God!

The endocrinologist felt so sorry for me. Again the same story. He agreed that I was pregnant – at least I had all the signs – but there was no baby, of course. It took several weeks before I was feeling better after this bad adventure. I was prescribed the correct dosage of Dagynil and slowly I felt more myself.

Today

In 2011, we moved again, and we found a good, friendly doctor. We told him openly about the problems we had in the past, and he listened very carefully.

About six months ago, I woke up and felt strange, like another psychotic attack was coming up. I made an appointment with the doctor and told him that there seemed to be something wrong. He looked through blood tests from the last few months, since I needed monitoring because I have collagen/microscopic colitis. Then he saw that my thyroid numbers were going up slowly but still within the margin that is normal.

I asked the doctor to make a phone call to the endocrinologist, which he did immediately, while we were sitting there. The endocrinologist explained my hormone troubles, and he advised him to prescribe Euthyrox. I was happy and felt better within a couple of weeks.

My abdominal pain is still there, and nobody knows if it is the endometriosis or the colitis, but another surgery will give more scars and troubles inside. Forty years of pain and problems and I still do not have a diagnosis and my treatment plan changes often.

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