My Surgical menopause – hysterectomy with bilateral salpingo-oophorectomy

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On June 6, 2017 I had a total hysterectomy with bilateral salpingo-oophorectomy.  That means removal of the uterus, fallopian tubes and ovaries.  Because I had very early Cervical Cancer, I also had my cervix removed.   Basically, she took all my reproductive organs.

The surgery was botched and I experienced severe post-operative bleeding.  This wasn’t picked up while I was in hospital, despite all clinical signs being there. The nurses assumed I was a hypochondriac, and didn’t treat me, escalate my case or treat my pain.

My closest friend, who had also had a hysterectomy with this surgeon, visited me in hospital. I told her I was in terrible pain. She didn’t raise the alarm.  I now know that she enjoyed watching me suffer.  (she said so)

I’m the first to admit I didn’t do my homework on this surgery.  My friend had used her, and told me she was excellent. My friend highly recommended her, until two days before my surgery.  At that time her husband said she was a terrible surgeon, horrible post-op care.

First I’d heard of it.

That worried me, but the surgery was booked.  I needed a hysterectomy, because cancer.  I also had a suspicious ovarian cyst, the kind they need to biopsy to find out if its ovarian cancer or not.  And I’d had Polycystic Ovarian Syndrome for decades.  I also had Adenomyosis, and every month experienced heavy bleeding and pain. It was too late to back out.  I always felt anxious before surgery, and so I told myself not to worry.

I should have backed out. I should have found another surgeon.  The trauma I experienced after that surgery has left me with PTSD and I am a changed person.  The betrayal from every person around me, friends, doctors, nurses, people I was counting on for help, the five days of uncontrolled agony and the fear from the emergency transfer to the public hospital ER, and the transfusions that saved my life…and then the way people treated me afterwards. NO help, no support, complete abandonment.

All of that has changed me.

The other thing that has changed me is my hormone profile.  At surgery I had an estrogen implant and a testosterone implant inserted.  Again, I didn’t do my homework enough, but the reading I did seemed sound.

Immediately after the surgery, in the months that followed, I felt hormonally great.  I would give anything to feel that way again.

But the testosterone implant ran out far too soon. They are supposed to last 4-6 months, mine failed after 2 months. I could feel it, like falling off a cliff.

I found a new OB/GYN, one who prescribes estrogen AND testosterone after surgical menopause, no easy feat!  Most doctors do not believe in testosterone supplementation, despite multiple studies that show benefit.

Women need testosterone.  The ovaries produce testosterone as do the adrenals.  Some women do fine without supplementation, because they get enough testosterone from their adrenal glands.

My adrenal glands do not work. I have Adrenal Insufficiency.  Not only do they not produce enough cortisol to maintain my body, they don’t produce testosterone either.

So I need testosterone supplementation.

I consulted with the OB/GYN and he believed I needed a new estrogen pellet. But I had to wait a few months, he refused to give me a new one now.

I begged.  He finally relented.

I had another estrogen pellet placed in October 2017, 4 months post op.

I felt no better. I was depressed, irritable, had bouts of rage, and even suicidal feelings.  (This was put down to after effects of the trauma).  I was gaining weight at an alarming rate, more than 1kg per week.  There was nothing I could do about it, I was exercising and eating very little, due to my Eosinophilic Esophagitis.

I weighed 78kgs immediately post op.  By October I weighed 88kgs.

I have a long history of anorexia nervosa and bulimia nervosa.  I recovered from those mental illnesses in my late 20s.  But I never overeat, and I watch my weight very closely. Being overweight causes me intense psychological distress and depression.

Therefore,  I have always watched my diet and exercised regularly.

Now there was nothing I could do about my weight.

I returned to my OB/GYN and told him I felt no better. I begged for the testosterone. My symptoms were not consistent with the list of symptoms of low estrogen. They were completely consistent with the list of symptoms of low testosterone.

He relented, and two weeks later he implanted another testosterone pellet.

Two weeks after that I was feeling great.  More energetic, more strength in the gym, more stamina, depression lifted, my libido returned and I’d lost a kilo. The weight loss continued at about 3 kgs every 2 weeks for the next two months.

And then the pellet started wearing off.

Depression returned. Irritability returned. Weight loss stopped and started to climb again.

It was clear to me that testosterone was what I needed.

I went back to my OB/GYN and he again insisted I needed estrogen.  I laid it all out to him, and had several more appointments.

The depression and stress was put down to it now being almost Christmas, and I was selling my house.

Doctors will find any excuse to back their theories.

Finally, in February, 4 months had gone by, and he agreed to give me another testosterone pellet.

By then I was up to 94kgs.

Same thing happened.  Depression resolved, mood improved, weight loss started, libido returned.

Until around four weeks ago.  Again, the pellet only lasted just under two months.

Clear pattern forming.  Now to convince the doctors.

I talked to my GP, he’s a trained OB/GYN who switched to General Practice. He said ‘No way’ on the testosterone.  He said that the side effects weren’t worth the benefits.  (Surely that’s my decision?).

He said testosterone could affect my liver, which is already not doing well.

(Yeah, but you’re happy to give me other drugs that are liver toxic…)

Honestly the risk of getting too much testosterone and being ‘over androngenised’ is pretty small.  The side effects are excess body hair, acne, male pattern baldness, deepening of the voice, enlargement of the clitoris, decreased breast size, increased muscle mass.

None of those are particularly tragic, and they can be reversed by ceasing the testosterone, or lowering the dose (with the exception of deepened voice and enlarged clitoris, these might be permanent the websites say).

But my GP would not be moved.

I searched for studies. There are a few. Mainstream medicine does not support testosterone supplementation,  despite there being good evidence.

Endocrinologists are a staid bunch. It’s a similar thing to Hypothyroidism.  There is clear evidence that some people need T3 and T4 supplementation to be healthy, but the vast majority of endocrinologists dispute this, and only prescribe T4, leaving their patients still hypothyroid. I fought that battle for years, finally finding a doctor who would prescribe desiccated pigs thyroid (natural thyroid extract).  When my GP saw the difference it made to me (15kg weight loss with zero effort) he agreed to keep prescribing it for me.  But I had to find a doctor who would prescribe it initially, to prove my case.

Now I’m in that same position.

I’ve had my hormone levels tested, but all doctors agree that bloodwork is not useful in HRT.  They still do it, as a guide, and then tell you it doesn’t really mean much.

Okay…

What matters is how the patient feels.  No amount of estrogen will make me feel better. I think I need steady state supplementation with testosterone and the best option I’ve found appears to be testosterone cream (Androfemme). You apply 5 or 10mg of the cream daily and within 2 weeks you have pre-menopause levels of testosterone.

Perfect!

That’s what I want. No more peak and feeling great for a few weeks and then crashing hard.  Or that’s the theory.

I can’t see there’s much risk, I can’t see why this is so hard, I can’t see the harm in trying.

I was seeing an endocrinologist about my Adrenal Insufficiency, so I asked her about the cream.  She’d never heard of it and refused to prescribe it.  She agreed that in men, supplemented with injectable testosterone, what I was describing was exactly what was seen, in her experience and in studies.

She agreed that in theory, the cream was superior.  She empathised. She understood why I was asking for the testosterone cream.

But she refused to prescribe it.  She isn’t familiar with it, and she hasn’t seen any studies on testosterone.

I am seeing my OB/GYN on Monday.  I will beg him yet again.  I need testosterone therapy and I need the cream, because the pellets don’t last long enough.

But will he agree?  Remains to be seen.

I will show him this study:

 

‘transdermal testosterone therapy improves sexual desire, arousal, orgasm frequency and satisfaction in premenopausal and postmenopausal women presenting with sexual desire/arousal problems. No adverse metabolic effects have been observed in these studies. In postmenopausal women, testosterone therapy has also been associated with favorable effects on body composition, bone, cardiovascular function and cognitive performance.’

https://www.ncbi.nlm.nih.gov/pubmed/23647457

 

Monash Uni also supports the use of testosterone supplementation in *some* post menopausal women and they have a long list of studies to support that point of view.

https://www.monash.edu/medicine/sphpm/depts-centres-units/womenshealth/info-4-health-practitioners/therapeutic-use-of-testosterone-for-women

 

I will take in that list.

And I will plead with him again.

With all my health problems, we don’t really have to worry about the unknown long-term effects of testosterone.  I just want an improved quality of life right now.  Doctors are trained in taking a scientific approach, but it’s a pretty proven fact that ‘women’s issues’ are not taken particularly seriously, and are not well studied.

If my OB/GYN doesn’t agree, I will find another doctor.  I will keep searching UNTIL I find a doctor who will prescribe. Or I will get my hands on testosterone another way.  I don’t see why I should suffer because doctors don’t keep up to date with studies, or they just don’t want to bother.

Quality of life matters.  I’ve fought this battle before, and I will do it again. I just wish I didn’t have to.

1 COMMENT

  1. I don’t know if this would help you but a friend of mine used a doctor that prescribes Bio-Identical Hormones for menopause. She uses the cream and I believe it is compounded specifically for her needs. I will add that she hasn’t had a hysterectomy just normal menopause. I wonder if this is the path you might have to go down. Apparently bio-identical docs charge a fortune, of course! Hopefullly your gyne can just listen to you and give you what you need so you don’t have to go through this crap every time you need your hormones. Best of luck next week.

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