Not (yet) a PCOS success story

by Rdzzz
(Australia)

Recently I got diagnosed with bilateral PCOS. Not, just that. I have an acutely reteroverted uterus and also a thickened endometrium.

I had anaemia. But, now it has worsened.

I did not get my periods for more than 55 days. That's when I saw the doctor.

The doctor suggested an ultrasound scan of my pelvis and that's how she found these.

She didn't want to scare me. She said it is only a hormonal imbalance.

Now, after learning its symptoms and looking back in life, it must have been present in me when I was in my early teens.

My periods have never been regular. Recently, I got it once in 15 days. The second one was a mild flow.
I get terrible back pains, cramps and pain in legs, muscles, feeling weak, tired and giddy. I have a crushing feeling all over my body -- neck, hands, knees, calf muscles, back, shoulders. I have heavy bleeding and clotting. I feel very uncomfortable to go out or be among people when there is excessive bleeding. I have been diagnosed with severe dysmenorrhea and pre-menstrual symptoms that sometimes lasted for a month and then back again in 20 days.

My breasts get heavy and very painful. The pain is more when I get up from bed. I can't sit for prolonged duration because of the back pain and I can't lie down longer because of breast pain. I suffer from incontinence.

I need to pass urine and stools very frequently. Doctor said that my uterus is totally upside down and the bad position is putting a pressure on my bladder. The measures are 5.2 x 3.6 x 3.3 cm. This could be the reason for incontinence and back pain.

It is so embarrassing to leave for the toilet during a lecture or exam. How difficult it is if I don't get a place in the first row or the corner seats.

So I avoid drinking water or eating food before an exam or lecture even if I feel like dying out of thirst or hunger. Still, that doesn't help.

I remember the times when I used to get down from my college bus 10 to 15 stops before my stop just to visit a nearby toilet and then use the public transport to reach home. I remember how much I struggled when my college cut off the afternoon toilet break. I can't go out because, I would lose the attendance if I arrived late for the next lecture and would be punished by being asked to stay outside. I can't risk eating outside and can't eat more spices or food that could cause a stomach upset. This is because, I have incontinence. I remember how painful it was when I had diarrhea the midnight before a tough exam. I went to the toilet 13 to 15 times.

Fortunately, by God's grace, I passed the exam. I never know when I would lose my energy and when I can't concentrate on my books. I am out of action half the day. I have only 12 hours a day in my life. I get scared of even the slightest thing these days. I get nervous. But, I hide it.

Sometimes I feel like I could have died earlier instead of having to face all these. I have not done any sin intentionally so far in my life. I have not harmed any one in this world. May be it is just my fate.
I have lost my cheerfulness and the smile you see on my face is not natural. I just smile because I think someday it will make me genuinely happy.

It is even more difficult when people I meet can't understand what I'm going through.

I hate shopping, long time outing. I avoided all the excursions in college. I didn't go for even one excursion in my college life of 4 years. The main reason being I had to travel for a long time by buses and visit places for long duration. I can't find a toilet and I didn't want to annoy others with my pain. But, not going out with friends doesn't mean I'm unfriendly. People can't understand a polite refusal. I can't speak out to everyone.

These days, I try not to stay alone. But again it is difficult to be with people when they see me visiting the toilet often.

I can't say how depressing it is. It is more depressing to act as though I'm happy. I experience lot of hair fall, unwanted hair on my face. I am losing my self confidence.

The doctor says yoga can give a temporary relief in changing the uterus position so that it doesn't trouble my bladder.

But, I have to do the correct exercise because, a wrong one can further complicate the position.
I can't find a yoga therapist. Even if I find one, I'm sure it will be big money that I have to spend.
The doctor says I have been enduring all these for so many years in my life without being diagnosed or treated.

I'm now on Clomiphene citrate, Metformin to induce the bleeding artificially. This is to avoid ovarian and uterus cancer. Tranexamic acid and Etamsylate tablets to reduce the excessive induced bleeding. Paracetamol, Hyoscine Butylbromide and tolfenamic acid for temporary pain relief. This apart from the tablets I have for vitamins and nerves. But, the tablets make me drowsy and sleepy. I wish I get some relief very soon in my life. I'm feeling giddy and I'm going to bed.

Thanks a ton for allowing me to vent.

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Editor's comments. No matter how bad your situation is, there is always something you can do to improve it. You still have a lot of power to determine your destiny.

For example, you say you have anemia. Most anemias can be improved. Find out what kind you have and what the treatment options are. As an example, if you megaloblastic anemia, you may have a folic acid or B12 deficiency (both are B-vitamins). If you've been taking metformin for a long time, an induced vitamin B12 deficiency is one of its side effects. So have your doctor find out whether your vitamin B12 level is too low. In this case, you might benefit from vitamin B12 injections. If you relieve the anemia, you will have more energy and your cells will get the oxygen they need to function properly. If you have more energy, your psychological outlook will improve.

That's just one thing you can do. There are dozens of other things. Find health professionals or other people who can help you. I'm sorry that I don't have time here to give you more suggestions.

By the way, metformin does not induce bleeding. It reduces a condition called "insulin resistance". Insulin resistance, which is thought to be a primary cause of most cases of PCOS, can be controlled to a major extent by eating a healthier diet, getting regular exercise, and reducing chronic stress.

It sounds like you are having side effects from the multiple medications you are taking. Who is coordinating all these medications?

Finally, a part of your empowerment process is to educate yourself about what options you have to improve your situation. A good resource is the Women's Encyclopedia of Natural Medicine by Dr. Tori Hudson. The first chapter covers abnormal uterine bleeding. It will give you some ideas for how to deal with it.