Sunday, 28 July 2013

Menstrual Cycle And Possible Death Sentence

Many years ago, before the full onset of puberty, I had this horrible abdominal cramp which necessitated me to be carried to the local doctor. The pain had lasted for a while by then, rendering me unable to walk or move much. However, by the time I was at the doctor's office the pain had subsided and it was dismissed as anything serious with no examinations performed. The years after that I would have those severe abdominal pains on a semi-regular basis until at some point into puberty I didn't recall them being that noticeable any more.

Of my physical condition before 2005 I do not recall much, as I was disjointed from my body to the point where I lost much of my sense of smell and hearing due to severe dissociation. What I do recall of the years since then is the frequent sensation of discomfort in my abdomen. The last few years especially, with an onset of burning pain in my lower abdomen, focused primarily on the area between the torso and the beginning of the legs as well in the nether regions, around the location of the vagina. The skin in that area will be sore and painful to the touch. After a few days this will subside again only to pop up later. Whether this occurs on a monthly basis I'm not sure.

There's also the regular bouts of nausea mostly in the morning but also suddenly during the day which seem to be linked to those periods of pain. Add to that a craving for different foods (mostly sweets and snacks) and a strong sense of irritation and being on the verge of bursting out in tears. Yesterday I nearly lost it when a chocolate bar wrapper refused to relinquish its contents. Despite sleeping well I'm tired during the day. I'm quite certain that in a few days this will have passed again.

Everything put together, there is the definite possibility that I have ovarian tissue and with it something resembling a menstrual cycle. The undeveloped testicles which were removed weren't ovatestes as is common with hermaphrodites. No research has been performed on variations in my hormonal levels, nor on the state or functionality of my closed-off vagina. With Dutch physicians outright denying that I am a hermaphrodite or even intersex, that's just not going to happen either.

It does put me into a pickle, however. First of all I feel bitter about not having been taken seriously as a child, secondly I feel sad and filled with despair as I realize that a) I know I'm unlikely to ever find a physician caring enough to perform the necessary research and b) I am quite aware of the risks of having a menstrual cycle if any tissue involved in creating the womb's lining is present. This can lead to Toxic Shock Syndrome (TSS) if the right (wrong) bacteria find their way into it, much like with those deaths from tampons a long time ago.

On one hand I shouldn't even think about these things, just suffer through these PMS-like symptoms every month as I'm not going to get medical help. On the other hand it turns my life into a game of Russian Roulette. Every time I feel a sudden stab of pain in my abdomen or nether regions which has me buckling over in pain it leaves me wondering how serious it is.

Feeling like crying in utter frustration now...


Maya

5 comments:

xterra said...

Please do not despair. True hermaphrodite condition is so rare that most of intersex clinics never came across such a case. Most of the doctor will dismiss this possibility right away. I think it's mostly due to the firm statements made by medical textbooks that genitalia should be ambiguous and visible. In reality, since both male and female organs develop independently, the female parts may not be visible at all. I was able to find that there are about 120 cases of true hermaphrodites. The level of organs development also varies for each individual.

I do understand your worries about your health condition. However, your brain is pretty smart when comes to regulating male and female hormone levels. Since your body started feminizing on it's own, you would have to assume that estrogen became dominant hormone and your hormones basically shifted from male to female. Are you on HRT? Do you have endocrinologist? Do you check your hormone levels?

There are couple reported cases when male bodies started feminizing even without presence of ovarian tissues and that is some form of intersex condition.

You should focus on physical aspects of menstruation. What types of pains? Where are they located? How long do they last? Any bloating? What time pains increases (night or day?) Do they fit in 28 days pattern? Are your nipples burning prior the beginning of the cycle or during the cycle? Keep journal of all the symptoms. Emotional part is important, but no doctor can confirm it. So keep it mostly for yourself.

If you are not on HRT, observe all body changes.

Try to learn more about you own body. Learn what happens to woman's hormones during menstrual cycle. How hormones interact with each other.

You have a lot of anger towards the doctors, but from your personal perspective this will not solve anything, but it will cause only more pain.

xterra said...

Please do not despair. True hermaphrodite condition is so rare that most of intersex clinics never came across such a case. Most of the doctor will dismiss this possibility right away. I think it's mostly due to the firm statements made by medical textbooks that genitalia should be ambiguous and visible. In reality, since both male and female organs develop independently, the female parts may not be visible at all. I was able to find that there are about 120 cases of true hermaphrodites. The level of organs development also varies for each individual.

I do understand your worries about your health condition. However, your brain is pretty smart when comes to regulating male and female hormone levels. Since your body started feminizing on it's own, you would have to assume that estrogen became dominant hormone and your hormones basically shifted from male to female. Are you on HRT? Do you have endocrinologist? Do you check your hormone levels?

There are couple reported cases when male bodies started feminizing even without presence of ovarian tissues and that is some form of intersex condition.

You should focus on physical aspects of menstruation. What types of pains? Where are they located? How long do they last? Any bloating? What time pains increases (night or day?) Do they fit in 28 days pattern? Are your nipples burning prior the beginning of the cycle or during the cycle? Keep journal of all the symptoms. Emotional part is important, but no doctor can confirm it. So keep it mostly for yourself.

If you are not on HRT, observe all body changes.

Try to learn more about you own body. Learn what happens to woman's hormones during menstrual cycle. How hormones interact with each other.

You have a lot of anger towards the doctors, but from your personal perspective this will not solve anything, but it will cause

Edith Zdunich said...

This is seriously alarming. Why can't they care that you are a human being and possibly will die if untreated? Never mind the textbooks! I'm so sorry that this is happening to you.

Maya Posch said...

@Edith: they have never thought it necessary to treat me as a human being in the Netherlands. Calling me crazy, delusional, obsessed... If I feel pain I must imagine it. If I think I have a certain physiology it has to be a delusion.

The sooner I'm out of the Netherlands, the better.

jemma redmond said...

Hiya Maya, I just came across your post as I've been searching for info on symptoms that are similar in some ways to yours... I have a dsd or an intersex condition, which one? I don't know exactly. Like you, I went to hospital as a teenager with severe abdominal pain, it went away, no tests were performed but I got abdominal cramps every now and again and very rarely blood. I was raised as a boy so I just figured I was crazy. So I've been on hrt for nearly a year now, the cramps are every 28 days precisely, lower back pain, moodiness, naseau (feeling like vomiting) some blood loss, dizziness, dehydration, some upper thigh pain. The doctors here told me I had a birth defect growing up, they would never tell me the truth and I'm still not being taken seriously. I've been for a US but nothing found, now they want to do an Mri, karotype tests, etc It sounds so crazy, yet I know its happening and being a scientist in the medical field, I'm skeptical but I know there's something going on. Most doctors won't take you seriously because they just call intersex a birth defect. They only listen to me when I tell them I grow human tissue in the labs so I know more than they do in some ways. Anyway I thought I was delusional too but I contacted other intersex people and I know one or two that do get the same symptoms. The worst part about the whole thing is the worrying....