Most Severe Perimenopause Ever? Plus Sagging Skin - Desperate

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This is my first post.  I am not exaggerating about anything I am sharing here. All is completely real and serious, and I am so very desperate for help and direction.  I thank each and every one of you willing to read and reach out . . .

 

My nightmare started just over one year ago when I turned 44.  It was my birthday, and I woke up to what I now realize was a hot flash.  I am a college instructor, and I went to work.  During classes, the hot flashes came one after the other, intensely, as well as severe anxiety and panic.  Within hours, I noticed severe heartburn, nausea, ringing in my ears, and a significant feeling of genital arousal.  The nausea intensified, and I ended up heaving in the bathroom.  I noticed my skin seemed very deyhdrated, so I drank extra water, and then, I called my husband at work in tears, telling him I did not know what was wrong with me.  I somehow suffered through my afternoon classes and scheduled an appointment with my OBGYN.  My family doctor had recently retired.  Upon getting home from work, I experienced tremendous fatigue.  I was unable to even prepare a meal for myself.  I wondered if I had a viral infection.  The exhaustion was indescribable.  Later, it would become clear that my adrenals were crashing each day after surging cortisol until they could not any longer.

Complicating matters was the fact that I had just gotten out of a false "friendship" with a man who contacted me through a health network for a rare neurological disorder from which I had recovered years before.  I wanted to help and be a support as this condition is quite isoloating.  It turned out that this person was some sort of sexual predator with psychopathic traits and zero conscience.  

I was emotionally abused at a distance (since I never met this person) over a period of nearly a year.  He was an intelligent professional in a respectable position, and I was fooled by his mask.  Over months, he systematically manipulated my emotions, though I excused much because of his "illness".  He began to subtlely berate me, my appearance (though most people compliment me), and things that are meaningful in my life.  His behavior became more perverse and cruel, and eventually, the mask came off.  I was so unbelievably traumatized by this whole situation, as I had attached to his fake persona.  Then, the cyberstalking and hang-up calls began, and they have continued over the past 18 months.  We have disconnected our phone, email, and changed cell numbers.  Anyway, I became ill with symptoms about six months after I stopped contact with him.  The damage to my self esteem and sense of worth and value would prove to be very difficult to recover.  I sought professional therapy and found great help there.

My symptoms became so severe, I began making plans to take medical leave at work, after 11 years of barely using a sick day.  My symptoms were intense and continuous 24/7:

Hot flashes, night sweats, persistent genital arousal (which often progressed to a type of nerve pain down there), heartburn, nausea/heaving, thinning hair, dryness everywhere, ringing in my ears, sound sensitivity, pins and needles sensations, EXTREME fatigue every day, body temp;erature fluctuations - hot and cold, insomnia, panic attacks, anxiety, and OCD symptoms, as well as body dysmorphic disorder, suicidal thoughts, depression, and loss of appetite/weight loss, and loss of muscle mass.  I noticed that my symptoms worsened on changing body positions.  For example, rolling over in bed in the morning could cause my heart to begin racing.  Also, going from sitting to standing coiuld do the same.

I have a history of mild, generalized anxiety, (never took meds for it) but these new symptoms were far, far beyond anything I had ever experienced before.  The symptoms were either on or off.  When on, ALL of them were happening at the same time and to a high intensity.  Otherwise, they were off, but there were very, very few periods of this during the first four to six months.  

I was beyond miserable.  I wondered if I had cancer (due to fatigue) or perhaps some other disease.  Surely, this could not all be due to hormones shifting.

My OBGYN performed blood tests, and my estrogen came back at 90-something, which she said was fine; that I was not menopausal.  She said my issues did not seem to be menopause related; that I should see an encocrinologist.

I scheduled with an endocrinologist who tested my cortisol levels, which came back elevated throughout the day but not high enough to be Cushings disease.  He said my symptoms did not seem to be endocrine related and that I should see an OBGYN.

I visited functional medicine specialists who said I should be taking bio-identical progesterone only.  I was skeptical, as I had already been taking a progestin for years due to endomentriosis pain, and of course, never had a problem with it, but now felt terrible.  No one mentioned estrogen.  They claimed I was "estrogen dominant" even though I was experiencing severe hot flashes, hair loss, dry, thin, sagging skin, and all the rest.  I was scared to try the progesterone cream and go off the med I had used successfully for endo for many years.

I contacted a sexual health specialist about the persistent genital arousal disorder, which is very rare, and he said he believed the cause of mine to be "central", meaning originating in the central nervous system.  He said there is no cure, only management of triggers.  This seemed devastating, as I was having a really hard time functioning at work, teaching, with the nonstop genital arousal/pain.  He said the discontinuation of SSRI meds can cause this problem from a decline in serotonin, though I was not taking any such meds.  Later I would learn that estrogen boosts serotonin and that a decline in estrogen produces similar effects to SSRI discontinuation.

I went to another functional medicine specialist who retested me and claimed I was estrogen dominant; that I needed progesterone cream.  I just did not believe this, as my breasts were now deflating/sagging, and I was losing more hair and suffering hot flashes.  My mother was fully menopausal at age 44.  I told every doctor this information.  My periods were no longer regular after years of clockwork.

I SUFFERED for months and months, trying to manage my symptoms with diet, stress reduction, and nutritional supplements.  I contemplated suicide, but I have a child with a disability, and that kept me from carrying out a drastic end to my unrelenting pain.

I finally scheduled an appointment at a big, respectable medical group in my state with an endocrinologist.  She said I most likely have an underlying neurological disorder, such as dysautonomia (a disorder of the autonomic nervous system) which is aggravated by hormone fluctuations.  She iimmediately indicated that I NEEDED ESTROGEN and prescribed me a small dose of a bioidentical estrogen patch to supplment my progestin pill.  She shared that she has seen estrogen literally stop many strange neurological symptoms in menopausal women.  I decided to wait until classes were out to try it.  By this point, it was six months since the start of this hell.  

I tried the patch, and within one day, my symptoms stopped, but I did experience side effects of nausea and migraine.  The migraine did not stop, even after weeks, and so I eventually removed the patch because it was intolerable. 

I noticed that my skin has sagged significantly in the past year - all over my body, but especially on my face, stomach, upper arms, and inner thighs.  Also, my body composition has really changed, with a major loss of muscle tone and excess jello-like fat everywhere.  I weigh under 110 pounds, but my butt now hangs and jiggles because it is complete fat, no muscle.  My mom has saggy skin and osteoporosis.  I am concerned this is happening to me.  It is so hard to take at this age especially.

I have a history of autioimmune-type disorders including antiphospholipid antibody disorder, endometriosis, sun allergy, and chronic, systemic hives.

I felt okay for a while off the patch, but soon the symptoms returned.  I went back on the patch, but a different brand.  It helped again, right away, and for about three months I felt great.  I even signed up to work on my doctorate degree.  

Then, I made a huge mistake.  I thought I was seeing melasma developing on my face, and I discontinued the patch.  I was operating from a place of fear due to my OCD and Body Dysmorphia.  This was so stupid.  I was okay for about a month, and then all of the symptoms came back.  I was not able to easily stabilize on my original dose.  I incerased above my full dose, per doctor's instructions, but it did not cover my symptoms.  So, I had increased up to .0625, and no relief.  I was still having hot flashes, night sweats, and anxiety, etc.

My doctor said I could go on a low-dose oral contraceptive since I am not fully menopausal yet, and that's what I did this past week.  It has worked to stop the symptoms, but I have some nausea and headache again.

My questions for you are about the hormone therapy:

I need to make a long-term decision about hormone therapy.  I would prefer bio-identicals, however, it seemed that the doses were quite low for the level of symptoms I am experiencing.  I am concerned that as my hormones continue to drop, they may not be sufficient.  I am trying to keep working and functioning through this all - ugh!

I am moving toward the end of peri, I think, so it is a time between oral contraceptives vs bioidenticals.  It is so hard to make a decision with so much conflicting information out there.  Synthetics are supposed to be bad and bioidenticals good, but yet, the doses are so low of the bioidenticals.  They are HRT doses, not contraceptive doses, which apparently, some younger women really need for the severity of symptoms.  

Due to my age and severity of symptoms, the bioientical doses do not seem to work for me consistently.  I could have gone as high as .1, which I did not, and maybe I should have before jumping on a birth control pill.  Also, even though I took bioidentical estrogen, I was still on the synthetic progestin, as my doctor did not want to change two variables at the same time.  Also, functional medicine specialists seem to label every woman as estrogen dominant no matter what.  That is surely not the case for me, and I suffered longer for not having the estrogen, which is the ONLY thing that has helped my symptoms.

Meanwhile, my skin is SAGGING.  Oh my gosh!  Please tell me this is normal.  I feel so bad.  It is affecting my self esteem.  I have also read that skin sagging on the outside is consistent with osteoporosis on the inside.  My nails are also brittle and dry, and they used to be so strong.  

So it is important to me to take a hormone therapy that helps these issues.  Can anyone give direction on this?  Bioidenticals supposedly preseerve/restore collagen, but will the oral contraceptive do the same?  I cannot seem to find information about this.  The oral contraceptive is supposed to protect against further bone loss.

I am seeing a dermatologist soon about my skin issues, just to rule out any other possible causes.  I cannot tell you the hit to my self esteem over this, which fuels my body dysmorphic disorder and anxiety, not to mention post-traumatic stress from the relationship with a psychopath who picked on my appearance.

Trying to gather enough information to determine if I should stick with the oral contraceptive for now or switch to a high dose bio-identical therapy (which is still very low dose), especially as it relates to sagging skin and osteopporosis prevention.

Please help, anyone.  I am exhausted physically and emotionally.  It's been hard to find answers to questions that will help me make a decision.  Often information from one source/doctor is in direct conflict with that from another.  I do not know a soul who has suffered with meopausal symptoms this severe, especially at this age.  

Thanks so much for reading, and I am thaniful for this place....

 

3 likes, 21 replies

21 Replies

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  • Posted

    Hi Amelia,

    How are you feeling ,I read your post I really can relate to you,I also been having ear,jaw,teeth pain, im here if you need to talk.

  • Posted

    Hey there sweetpea,

    I am so sorry for what you are going through.  I promise you though, you are not alone.  Plenty of us are in this hell together and you have come to the right place.  These women are fantastic, strong beyond comprehension.

    Mine started four years ago, when I was 46.  I am not saying it gets better right away, for me it hasn't.  But, I think you learn to handle it better over time.  I really do.  I know that seems like small consolation, but there are times I actually laugh at myself now.  There was a time when I couldn't.

    I don't believe that the situation with the terrible man in your life helped things any.  I heard a psychologist say that people recover from trauma all the time, but dealing with a malevolent person is another matter entirely.  And that is what you endured my friend, a full-blown sociopath.  I am wondering if this experience has magnified your symptoms...is this a possibility?  Do not under-estimate the kind of damage an experience like this can cause.  Moreover, do not hesitate to reach out for help dealing with it. It is truly a tragic experience.  God Bless you.

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