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TIA Provoked by Birth Control Pills Prescribed for Endometriosis

Published on September 8, 2016

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TIA with birth control prescribed for endometriosis

I’m a 34 year old woman living in North Italy. I’ve had pelvic pain since my first period, which several doctors have stated is likely due to endometriosis. In trying to treat this pelvic pain, I was prescribed the birth control pill, which led to me having a transient ischemic attack (TIA).

Seeking Help for Endometriosis

In January 2012 I suffered from a strong pain around my left ovary and I decided to consult with a gynecologist. After a negative transvaginal ultrasound the doctor just prescribed some over-the-counter painkillers, telling me not to worry about my pain. I asked if it could be endometriosis (I had read an article about it and realized it explained all my pains) but he minimized it and told me again not to worry about it.

At first I felt reassured, but my pain was always there: pelvic pain, bowel pain, backache, and fatigue. In June 2014 I consulted with a gynecologist at a hospital in North Italy where there is a specialized centre for endometriosis. After a negative abdominal ultrasound they ordered a pelvic MRI, and suggested progestogenic therapy with Primolut Nor (Norethisterone Acetate).

The MRI was negative and since the hospital was far away from home and I wasn’t happy with the doctor I met, I decided to consult with another gynecologist in my town. In April 2015 the new doctor prescribed me a blood test: blood count, white blood cells, serum iron, folic acid, thyroid hormones, prolactin and CA125 (only the last two resulted slightly high). Then she prescribed me Primolut Nor, ¼ pill every day.

I asked her about possible side effects but she told me not to worry since the dosage was low. I started taking the progestin pill on June 9. After a few days I felt a strange feeling in my body, quite difficult to describe, but I felt like something wrong was going wrong inside me. My breasts were very sensitive, almost painful. My hair became thinner and started falling out especially around my ears. This stopped only after 6 months, during which a dermatologist prescribed me supplements and other hair products; psychologically it was a very difficult time.

Transient Ischemic Attack

On the fifth day, I suffered from a migraine with aura. Some days later I lost sensitivity in the 5th finger of my right foot; I had never experienced anything like that before, but I didn’t pay much attention to it. On June 25 my period started. In the evening I felt something like a pressure, a weight on my chest and some difficulty in breathing. I also had a strong headache, different from any one I had before.

The day after, in the morning, I started feeling strange, cold, weak and shivers in my body. Then suddenly I felt a sharp pain behind my right ear and I lost sensitivity in the right part of my face and in the right arm. I was very scared.

I phoned my gynecologist but she was busy. I called my family doctor and he told me to take aspirin during that day and stop taking Primolut Nor. After some hours the sensitivity slowly came back, but it took some days to feel normal again.

Thinking about it later I think I was very lucky and I should have gone to the hospital immediately but I didn’t understand the seriousness of the situation at that time. In the evening my gynecologist phoned me back, telling me to make an appointment to meet her.

We talked about what happened, and she told me I suffered from a transient ischemic attack, which is just like a stroke, where a blood clot blocks a blood vessel in the brain, except with a TIA that the blockage is temporary and goes away on its own. A TIA serves as a warning sign that a stroke is going to happen. My doctor thought that it was very strange because the dosage of the pill was so low, and that maybe it wasn’t the pill’s fault and that it could have happened even without the pill (this explanation really dissatisfied me). She said she couldn’t do anything more for me and suggested me to consult with a hospital in a nearby town, which deals with endometriosis.

Still Suffering with Endometriosis

In the meantime, my pain had become unbearable and present almost every day. I had also developed digestive difficulties. In August 2015 I met another new gynecologist. She did a transvaginal ultrasound which showed an irregularity in the uterus, probably adenomyosis, and another irregularity behind the uterus, probably an adherence with the bowel. But she explained to me that there’s no way to operate and cure the uterus of adenomyosis, except to do a hysterectomy. Because of my symptoms, she thinks I also suffer from endometriosis (like the other doctors said to me before).

She said it was too dangerous to try the pill again. She sent me for some tests, which I did during the past months: a new CA125 blood test, a pap test, a lower gastrointestinal series and a consult with a gastroenterologist (who prescribed me stool tests and celiac disease tests). She also sent me for a pelvic ultrasound, but despite the sharp pain I felt in some specific areas of my pelvis, it didn’t show anything. All these exams were negative.

Since last fall I’ve also started suffering from pain in my hips. The X-rays didn’t show anything and so my family doctor sent me for a MRI. While the hips looked normal on the MRI, it unexpectedly showed what seems an endometrioma cyst on my left ovary. I know it sounds strange to say, but this discovery has given me new hope. It finally shows that all the pain isn’t in my head (I never thought it was, but this is how I’ve often felt dealing with other people about my illness); and now that I’ve completed all the tests and I have to go back to the gynecologist, maybe this time some treatment could be discussed (maybe a laparoscopy?) and I will gain some relief. All aspects of my life are of course influenced by my health condition, but I don’t want to give up, even if year after year, exam after exam, I sometimes feel very stressed and weary.

Real Risk Study: Birth Control and Blood Clots

Lucine Health Sciences and Hormones Matter are conducting research to investigate the relationship between hormonal birth control and blood clots. If you or a loved one have suffered from a blood clot while using hormonal birth control, please consider participating. We are also looking for participants who have been using hormonal birth control for at least one year and have NOT had a blood clot, as well as women who have NEVER used hormonal birth control. For more information or to participate, click here.

Not Endometriosis. Now What?

by R S

Published on June 25, 2013

23610 views

I was functioning under the assumption that I had endometriosis. It seemed the most likely disease based in the information given me by my doctors. I underwent a diagnostic laparoscopy and waited for my surgeon to follow up with me.

It’s Not Endometriosis

As it turns out, I don’t have endometriosis and my internal structures appear normal. I’ve been referred to a pain management specialist. It has been suggested that I might see a neurologist as well. “If we can’t find the cause, we can at least treat the symptoms. You may have a rare form of cystitis, or you may not. Please try to focus on the good news: you don’t have cysts or tumors or scar tissue,” said my surgeon. I admit I was very disappointed in a strange way. It’s the very human need for an explanation. Without a known cause, how can we stop this from returning again?

Four days after surgery, I got food poisoning. I recovered after five days.

However, now I am terribly dizzy and have severe fatigue. Is it related to the endometriosis-like abdominal pain or something else? I can barely stay awake. In fact, I sleep most of the day and night. It’s not sleepiness. I simply cannot stay conscious. I’m always hungry and eating, but I’m losing weight slowly. There is ringing in my ears on and off. I find myself confused by simple tasks. I tried to fry an egg on a good day and found I couldn’t lift the pan. I’ve fainted twice last week: once after a blood draw, and once just in my home after a stressful conversation.

My general practitioner has run blood tests for anemia, vitamin deficiency, diabetes, and thyroid disorders, as well as a comprehensive blood count. He also told me that most of the time, when trying to diagnose fatigue and dizziness, these blood tests come back normal. I should be prepared to search for other answers. Diabetes and thyroid disorders run in my family, and I’m really hoping it’s easily found out so I can find treatment soon. My ears were checked for infection, and they appear fine. He also suggested that it could be severe depression, but I’m not so sure. I’ve had depressive episodes before, and while I was sluggish and slow to make decisions, I wasn’t this dizzy or weak.

Symptoms that Led Us to Suspect Endometriosis

As for the pelvic pain, it started in late November, very sharp and stabbing on the right-hand side over my ovary over the course of two days, growing rapidly more painful. The ER docs said it was a ruptured ovarian cyst, and noted that when pressed, my left ovary was very tender and painful as well.

That pain was supposed to heal in three to five days and just didn’t, growing less stabbing. It was a constant ache, day and night, for four months over my right lower quadrant with intermittent sharp cramping. When pressed, my left lower quadrant was just as painful, but didn’t throb or cramp on its own.

A course of progesterone halved the pain. Birth control dampened it a bit more. Hot baths and heating pads also helped somewhat. Exercise made it much worse, as did standing and walking for even short periods or leaning over. Pelvic exams and ultrasounds also hurt very much. Going to the restroom hurt terribly.

What really helped was removing the benign tumor in my colon. Some of the pain had been very bad intestinal cramping throughout my abdomen. I have most of my mobility back now. Occasionally, it will feel like there are hot, throbbing points in my pelvis for about three to six hours at a time, usually on the right side. Advil, a heating pad or ice pack, and lying very, very still help.

Also, since November, my periods have been dreadful. Terrible cramps like I’ve never had, and the week before and after my period, I’m very tender throughout my pelvis and it feels like I’ve thrown my lower back out. They never used to be this way.

After the laparoscopy, where everything was found normal, I had sharp, hot throbbing for several days over my right ovary again. The surgeon said she has no explanation except for perhaps a very uncommon form of interstitial cystitis, but I don’t have half of those symptoms. Sitting in a moving car and long walks cause a sharp ache on the right side of my pelvis, but it isn’t constant like it was for three months beforehand. The pelvic pain comes and goes, and it’s about one-third of its former intensity. I don’t know what would cause it to come back full force and constantly, but I hope it never does.

After seven months of poor health, I’m baffled by all my tests returning normal. If it’s not endometriosis, then what is it? If these tests come back normal, I’m not sure what other steps to take.

birth control endometriosis