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Women’s Health
Included below are different types of hormone therapy, procedures, and surgeries used to manage menstrual bleeding in girls and women with GT. These are the commonly recommended medications and procedures. Medications can go by different names in different countries.
As always please follow your health care provider’s instructions. Many women have been instructed to take multiple doses of their hormone therapy tablets daily, so if they suggest multiple tablets daily, don’t be surprised. Lysteda (tranexamic acid) is approved to suppress menstrual bleeding but is not hormone therapy.
Lysteda™
LYSTEDA™ (tranexamic acid) Tablets is indicated for the treatment of cyclic heavy menstrual bleeding.
Hormone Therapy / Birth Control
Primolut (Hormone Therapy, tablet)
Primolut N can be used in several different circumstances:
- to treat irregular, painful or heavy periods
- to treat endometriosis (where tissue from the lining of the womb is present in places where it is not normally found)
- to treat premenstrual syndrome (also known as premenstrual tension, PMS or PMT)
- to delay periods
Junel (tablet, US)
This combination of hormone medication is used to prevent pregnancy. It contains 2 hormones: a progestin and an estrogen. It works mainly by preventing the release of an egg (ovulation) during your menstrual cycle. It also makes vaginal fluid thicker to help prevent sperm from reaching an egg (fertilization) and changes the lining of the uterus (womb) to prevent attachment of a fertilized egg. If a fertilized egg does not attach to the uterus, it passes out of the body.
Norethindrone (tablet, US)
This medication is used to prevent pregnancy. It is often referred to as the "mini-pill" because it does not contain any estrogen. Norethindrone (a form of progestin) is a hormone that prevents pregnancy by making vaginal fluid thicker to help prevent sperm from reaching an egg (fertilization) and changing the lining of the uterus (womb) to prevent attachment of a fertilized egg. If a fertilized egg does not attach to the uterus, it passes out of the body. This medication also stops the release of an egg (ovulation) in about half of a woman's menstrual cycles.
Loette (tablet)
Active ingredient: Ethinylestradiol; Levonorgestrel
Minulet (tablet)
What Minulet is used for: Minulet is an oral contraceptive. Minulet tablets contain two hormones (gestodene and ethinyloestradiol), which prevent you from becoming pregnant if taken correctly. They are similar to the hormones that your body normally produces.
Depo-Provera® (DEP-po pro-VAIR-ah) CI (injection, US)
(medroxyprogesterone acetate injectable suspension) Depo-Provera CI is a progestin hormone birth control method that is given by injection (a shot) to prevent pregnancy.
Lupron (subcutaneous injection)
Leuprolide overstimulates the body's own production of certain hormones, which causes that production to shut down temporarily. Leuprolide reduces the amount of testosterone in men or estrogen in women.
Mirena (IUD)
Mirena® is a hormone-releasing IUD that is over 99% effective at preventing pregnancy for as long as you want, for up to 5 years. Mirena can be used whether or not you have had a child. Mirena also treats heavy periods in women who choose intrauterine contraception.
Procedures and Surgeries
Endometrial Ablation
What is endometrial ablation? Endometrial ablation is a procedure to remove a thin layer of tissue (endometrium) that lines the uterus. It is done to stop or reduce heavy menstrual bleeding. But it is only done on women who do not plan to have any children in the future. The procedure is not surgery, so you will not have any cut (incision). Instead, your healthcare provider puts small tools through your vagina to reach your uterus. Your provider has several ways to do the procedure. He or she can use:
- Electricity (electrical or electrocautery). In this method, your provider uses an electric current that travels through a wire loop or rollerball. The current is put on the uterus lining to destroy it.
- Fluids (hydrothermal). This method uses heated fluid. It is pumped into the uterus to destroy the lining.
- Balloon therapy. Your health care provider puts a thin tube (catheter) into the uterus. The catheter has a balloon at the end. Your provider fills the balloon with fluid and heats it. The heated fluid destroys the lining.
- High-energy radio waves (radiofrequency ablation). In this method, your provider puts an electrical mesh into the uterus. He or she expands it. Then your provider sends an electrical current made by radio waves to destroy the lining.
- Cold (cryoablation). Your provider uses a probe with a very cold temperatures to freeze the lining.
- Microwaves (microwave ablation). Your provider sends microwave energy through a thin probe to destroy the lining.
Some endometrial ablations are done using a tool called a hysteroscope. This tool lets your provider see the inside of your uterus. He or she can use a camera on the tool to record what is seen.
Why might I need an endometrial ablation? You may decide to have endometrial ablation if you have heavy or long periods. You may also have it for bleeding between periods (abnormal uterine bleeding). In some cases, the bleeding may be so heavy that it affects your daily activities and causes a low blood count (anemia) because of it. Heavy bleeding is described as bleeding that requires changing sanitary pads or tampons every hour. Long periods are described as lasting longer than 7 days.
Menstrual bleeding problems may be caused by hormone problems. This is especially true for women nearing menopause or after menopause. Other causes include abnormal tissues such as fibroids, polyps, or cancer of the endometrium or uterus.
Endometrial ablation lessens menstrual bleeding or stops it completely. You may not be able to get pregnant after endometrial ablation. This is because the endometrial lining, where the egg implants after being fertilized, has been removed. Pregnancies that occur after an endometrial ablation are not normal, therefore it is important to use a reliable form of birth control. You will still have your reproductive organs.
Your healthcare provider may have other reasons to suggest endometrial ablation.
Uterine artery embolism
Uterine artery embolization (UAE) is a procedure to treat fibroids without surgery. Uterine fibroids are noncancerous (benign) tumors that develop in the uterus (womb). During the procedure, the blood supply to the fibroids is cut off. This typically causes the fibroids to shrink.
What is uterine artery embolization? Uterine fibroid embolization is a procedure to shrink noncancerous tumors in the uterus called uterine fibroids. It does not use major surgery, so you may recover faster. You also may not need to stay in the hospital. Uterine fibroid embolization shrinks fibroids by blocking off their blood supply. The doctor injects very small particles like sand into the arteries that supply the fibroids. The particles stick to the vessel wall. This causes a clot to develop that blocks off the blood supply. Once the blood supply is gone, the fibroids shrink. Your symptoms usually ease or go away over time. Several types of particles are used for uterine fibroid embolization. These substances have safely been used by doctors for many years. The procedure is done by a doctor called an interventional radiologist. This doctor specializes in treating conditions without using major surgery. Instead, he or she uses small tools plus imaging tests. These tests may be X-rays, CT scans, MRI, fluoroscopy, or ultrasound.
Why might I need a uterine artery embolization? The main reason to have a uterine fibroid embolization is to treat uterine fibroid tumors that are causing pain or other problems. Nearly all fibroid tumors are benign or not cancerous. It is rare to have a cancerous fibroid. About a third to a half of women of childbearing age have fibroids. Not all tumors are diagnosed because they are too small. The fibroids can range from the size of a pea to as large as a softball or small grapefruit. Uterine fibroid embolization may not be recommended if your fibroids are very large.
Your healthcare provider may recommend this procedure if you have:
- Low blood count (anemia) from uterine bleeding due to fibroids
- Fullness or pain in your belly
- An enlarged uterus
- A belly that is larger than normal
- Infertility
- Bladder pressure that makes you feel like you need to urinate often
- Pressure on the bowel that causes constipation and bloating
- Pain during sexual intercourse
- Pain in your back or legs, which may be caused by the fibroids pressing on nerves
Your healthcare provider may have other reasons to recommend a uterine fibroid embolization.
Hysterectomy
A hysterectomy is a surgery to remove a woman's uterus or womb. The uterus is the place where a baby grows when a woman is pregnant. After a hysterectomy, you no longer have menstrual periods and can't become pregnant. Sometimes the surgery also removes the ovaries and fallopian tubes. If you have both ovaries taken out, you will enter menopause.
Your health care provider might recommend a hysterectomy if you have:
- Fibroids
- Endometriosis that hasn't been cured by medicine or surgery
- Uterine prolapse - when the uterus drops into the vagina
- Cancer of the uterine, cervix, or ovaries
- Vaginal bleeding that persists despite treatment
- Chronic pelvic pain, as a last resort
Laparoscopic Hysterectomy
A hysterectomy is the surgical removal of the uterus. Hysterectomies are performed for a wide variety of reasons. A hysterectomy is a major surgery, but with new technological advances, the discomfort, risk of infection, and recovery time have all been decreased.
There are currently three surgical approaches to hysterectomies. These include:
- Open, traditional hysterectomy. This involves a six to twelve-inch incision made in the abdominal wall.
- Vaginal Hysterectomy. This involves removing the uterus through the vagina. This approach is better than the open, traditional hysterectomy, but still does not allow the surgeon a full view of the surrounding organs, including the bladder.
- Robotic-Assisted Radical Total Laparoscopic Hysterectomy. Using a state-of-the-art robotic platform allows the surgeon a full view of the surrounding organs and more precise control over incisions.
- Laparoscopic Assisted Vaginal Hysterectomy. This is when a portion of the operation (intra-abdominal) is completed with the laparoscope and the remainder of the operation (vaginal incision, excision of cervical tissues) is completed transvaginally.
- Total Laparoscopic Hysterectomy. When the entire operation is performed using the laparoscope and the surgical specimen is removed via the vagina.
Tracking Your Menstrual Cycle
For female GT patients, it’s important to track your period to get an accurate understanding of flow and blood loss. This will be valuable information for your gynecologist and hematologist to have. It is important to track how many days your period lasts, count how many pads and tampons you use daily, what type of pad/tampon (light, regular, heavy), how full your feminine products are when you change them if you are passing clots, the size of the clots, and how many days until the next period.
If you have a vagina and GT you will likely have menorrhagia.
Menorrhagia is menstrual bleeding that lasts more than 7 days. It can also be bleeding which is very heavy. How do you know if you have heavy bleeding? If you need to change your tampon or pad after less than 2 hours or you pass clots the size of a quarter or larger, that is heavy bleeding. If you have this type of bleeding, you should see a doctor.
Untreated heavy or prolonged bleeding can stop you from living your life to the fullest. It also can cause anemia. Anemia is a common blood problem that can leave you feeling tired or weak. If you have a bleeding problem, it could lead to other health problems.
Signs you might have menorrhagia if you:
- Have a menstrual flow that soaks through one or more pads or tampons every hour for several hours in a row.
- Need to double up on pads to control your menstrual flow.
- Need to change pads or tampons during the night.
- Have menstrual periods lasting more than 7 days.
- Have a menstrual flow with blood clots the size of a quarter or larger.
- Have a heavy menstrual flow that keeps you from doing the things you would do normally.
- Have constant pain in the lower part of the stomach during your periods.
- Are tired, lack energy, or are short of breath.
Click here for a list of some recommended apps to track your period →