It's a bit of a mouthful alright.
What's the cause of Endo?
There is no known cause for Endometriosis. There are however many theories out there. One such theory is retrograde menstruation. It's basically "backward menstrual flow". The endometrial cells that shed when your period occurs travel backwards through the fallopian tubes into the pelvis where they implant and grow. A lot of researchers believe that this happens with many women but, they also think that the immune system is different in Woman with Endo. So make what you will of that theory.
Another reason some Women develop Endo is because of their genetics.
It's not that common, is it?
Buzz! Incorrect! Endo is more common that you think. It is typically diagnosed in women between the ages of 25- 35, however the condition more than likely occurs when regular menstruation begins.
1 in 10 Women suffer from Endometriosis in the UK. 176 Million Women and girls suffer globally from this chronic illness. Are you one of them?
How likely am I to develop Endometriosis?
You are more likely to have Endo if it runs in your family. I.E your Mother, Sister has it. I say more likely, not definitely nor "your not going to get it if it doesn't run in you family". Research has shown girls/women are more likely to develop Endo if;
- You started your period at an early age
- You've never had children
- Your period lasts more than 7 days or is frequent
- You have a closed hymen which blocks the flow of menstrual blood during a period
I think I might have it. What are the symptoms?
The main symptom of Endo is pain! Along with this a Woman with Endo may present with;
- Painful periods
- Pain in the lower abdomen before and during menstruation
- Pain during or following intercourse
- Pain with bowel movements
- Cramps from 7-14 days before menstruation and during. These cramps can range from mild to severe.
- Lower back of pelvic pain that may occur at any time during menstruation.
- Being unable to become pregnant one year after trying.
NOTE: You may also not have any of the above symptoms but still have Endo, so go to your G.P if you think at any point that you are concerned about Endo. Some women have very mild Endo others have severe Endo.
Understanding this disease.
Endometriosis has long been known as an "invisible illness". It's there but no one can see it. People don't believe you can be in as much pain as you actually are. They find it hard to understand. These picture's
really sums it up;
How do I get diagnosed?
Unfortunately there is no quick test to detect Endo. This is a process. A process which can go on for a number of years although if you can keep a diary from an early age of your cycle it will help your Doctor's to see any patterns emerging. Write down how long your cycle is, remember Day 1 of your cycle is the first day you bleed. Count from then to your next period. Make additional notes such as, severity of bleeding, pain rating (I base this on a 1-10 scale), presence of clots or tissue. This will aid not only you but your Doctor.
Your Doctor will firstly give you a pelvic exam, very common, and not at all painful just mildly uncomfortable at times.
You may be sent for a Transvaginal Ultrasound. This is where a probe (although I hate that word) is inserted into the Vagina enabling your Doctor to have a full view of your reproductive organs, including the ovaries and cervix.
It is like a normal ultrasound in that you can see it on the screen, gel is used. It can be slightly uncomfortable, a little painful I won't lie but many Women find it fine. The more you relax, generally I find it to go a lot quicker and easier for all involved.
A lot of the time Endo can only be fully diagnosed by a pelvic Laparoscopy. This is generally a out patient procedure, most Women can go home the same day. You will be put under General Anaesthetic and incisions will be made into your abdomen so the scopes can have full access. A tiny camera is on the end of the laparoscope which allows your Doc to see on a screen what's going on inside you.
You will have to sign a consent form before the op and also fast from the night before or 8 hours before your surgery. It's basically key hole surgery. In the diagnosis of Endo, generally your Doc just wants to see if it's present. If you show signs of cysts, adhesions or Endometriosis being present then your Doc may use another incision site to place a scope in with a tool to remove the cysts, adhesion and so on. (This will all be mentioned on the consent form)
So, you may be freaked out here. I have taken the liberty of listing how this procedure will feel to hopefully calm your mind.
- If you are given general anaesthesia you will feel no pain during the procedure. The surgical cuts may throb and be slightly painful afterwards Your doctor may prescribe medicine to relieve pain.
- With local anaesthesia you may feel a prick and burning sensation when the local anaesthetic is given. The laparoscope may cause pressure, but there should be no pain during the procedure.
- Afterwards, you may also feel soreness at the site of the surgical cut. Your doctor may prescribe a pain reliever.
- You may also have shoulder pain for a few days. The gas used during the procedure can irritate the diaphragm, which shares some of the same nerves as the shoulder. You may also have an increased urge to urinate, since the gas can put pressure on the bladder.
- You will recover for a few hours at the hospital before going home. You will probably not stay overnight after a laparoscopy.
- You will not be allowed to drive home. Someone should be available to pick you up after the procedure.
OK I'm still here. Tell me about Treatment.
Treatment for Endo depends on several factors;
- Severity of Disease
- Age
- Severity of Symptoms
- Your desire for children in the future (some treatments involve permanent changes to your womb such as a hysterectomy where the womb is completely removed and therefore you cannot bear children)
You can manage your symptoms by using;
- Exercise and relaxation techniques
- Nonsteroidal anti-inflammatory drugs (NSAIDs), such as ibuprofen (Advil) and naproxen (Aleve), acetaminophen (Tylenol), or prescription painkillers to relieve cramping and pain.
For other women, treatment options include:
- Medications to control pain
- Hormone medications to stop the Endometriosis from getting worse
- Surgery to remove the areas of Endometriosis or the entire uterus and ovaries
Treatment to stop the Endometriosis from getting worse often involves using birth control pills continuously for 6 - 9 months to stop you from having periods and create a pregnancy-like state. This is called pseudopregnancy. This therapy uses oestrogen and progesterone birth control pills. It relieves most Endometriosis symptoms. However, it does not prevent scarring or reverse physical changes that have already occurred as the result of the Endometriosis. (This treatment option may not suit all Women)
Other hormonal treatments may include:
- Progesterone pills or injections. However, side effects can be bothersome and include weight gain and depression.
- Gonadotropin-agonist medications such as nafarelin acetate (Synarel) and Depo Prover or Lupron to stop the ovaries from producing oestrogen and produce a menopause-like state. Side effects include hot flashes, vaginal dryness, and mood changes. Treatment is usually limited to 6 months because it can lead to bone density loss. It may be extended up to 1 year in some cases.
Surgery may be recommended if you have severe pain that does not get better with other treatments. Surgery may include:
- Pelvic laparoscopy or laparotomy to diagnose Endometriosis and remove all endometrial implants and scar tissue (adhesions).
- Hysterectomy to remove the womb (uterus) if you have severe symptoms and do not want to have children in the future. One or both ovaries and fallopian tubes may also be removed. If you do not have both of ovaries removed at the time of hysterectomy, your symptoms may return.
{NCBI}
What should I expect from my treatment?
The prognosis for Endo patients varies from Woman to Woman. There is nothing set in stone here which is why this disease can be so frustrating at times.
Hormone therapy and laparoscopy cannot cure endometriosis. However, these treatments can help relieve some or all symptoms in many women for years.
Removal of the womb (uterus), fallopian tubes, and both ovaries (a hysterectomy) gives you the best chance for relieving you of the symptoms and pain of Endo. {NCBI}
Now, I think it should be noted that many Doctor's will not perform a hysterectomy on a Woman unless they are of a certain age, generally mid 30's or later, have finished child bearing or in extreme circumstances they may remove the womb of a younger patient if they deem this is the only appropriate treatment. It's should not be your first choice at all in my opinion.
I'm guessing there are complications?
You'd be 100% correct. As with any condition/disease there are complications. For Endo sufferers these can be Acute or Chronic (short-term or long-term).
Endometriosis can lead to problems getting pregnant (infertility).
DO NOTE: Not all women, especially those with mild Endometriosis will have infertility.
Laparoscopy to remove scarring related to the condition may help improve your chances of becoming pregnant. If it does not, fertility treatments should/may be considered.
Other complications of Endometriosis include:
- Long-term (chronic) pelvic pain that interferes with social and work activities
- Large cysts in the pelvis (called Endometriomas) that may break open (rupture)
In a few cases, Endometriosis implants may cause blockages of the gastrointestinal or urinary tracts. This is rare.
Very rarely, cancer may develop in the areas of Endometriosis after menopause.
I don't think I can do this alone.
Good news! You don't have to. There are so many support groups out there for Women with Endo. We are all united by this disease and call ourselves ENDO SISTER's.
March is the awareness month for Endo to help people understand this disease better, although our efforts are all-year round it's nice to have a certain month where we can all get together, united in our cause to create awareness and reduce ignorance associated with this disease.
Your family and loved ones are the best place to start for support but as I said there are plenty of groups many online. You can talk anonymously if you wish, you don't have to give your life story. But if you are feeling overwhelmed (which we've all felt) you know there is always someone you can talk to who will understand what you are going through.
Having the emotional support you need enables you to cope much better with Endo.
Right, I'm not letting it beat me.
Having a positive attitude will help you when suffering with Endo. It can and will be hard at times, but you will find that if you can sum up the inner strength to maintain a healthy positive outlook then you will get through it.
How can people help me?
Taking this on board will prove really helpful to you. Share it, show it to your family, friends, loved ones. Trying to make people realise what you are going through with Endo is probably, I find anyway, harder than dealing with the issue itself. You feel like you're fighting the people you love as well as the illness you don't.
Awareness is key here. Companies like Zazzle do great t-shirts, mousepads, mugs, key rings, buttons, pins, ties, baby gro's, pretty much anything you can think of to create awareness. I know I mentioned the pain level thing earlier. This is really for your diary starting out. However, you will learn that below here is very true as you can only base your worst pain on your last bad day. We build up a tolerance to pain so your 10 goes up a level each time. I really like this top though.
So if you feel like you can't say it out loud why not wear it?
Still confused? Grab a copy of this and share with your loved ones :-)
