Today, I started wondering about the medication they have me on – Arvekap. This was part of my “Down-Regulation”, but I must confess I was not totally certain what that meant.
Fortunately, looking it up, I found MUCH more information here in Greece than I did in the US. Thanks Google Algorithm.
What is Arvekap?
Arvekap is used for many reasons, but the function of Arvekap is to suppress the ovarian (and testicular) function through suppressing the production of certain hormones. Surprisingly, Arvekap works by initially stimulating the body to overproduce the hormones it will eventually suppress and creating a feedback loop. The longer you use it, the more effective it is at suppressing hormones. For IVF, this is used to prevent follicle rupture, making sure there are many eggs to collect on retrieval day.
Interestingly, I discovered that some doctors prescribe Arvekap as a form of treatment for Endometriosis. As someone that has struggled with this cruel disease for years, I tend to be interested in anything that has to do with treatment. After some further research I concluded what I already know – it seems like the best treatment for endometriosis is excision.
About Endometriosis:
With that, I thought I may cover common questions about endometriosis in order to help the conversation – and the fact that there are treatment options – see more daylight.
I am going to start this by saying, I am not a doctor. I am a patient of endometriosis, and I have done what so many patients with endometriosis have had to do – I have had to become my own doctor, my own lawyer, my own insurance, and my own advocate. Unfortunately, the resources for endometriosis are limited and dated.
Anyone first diagnosed with the disease and starts researching it WILL feel discouraged because this what they will see (and what they will be told by doctors):
- There is no treatment for endometriosis
- Endometriosis causes infertility
- Endometriosis has the potential to cause diseases down the road such as cancer
- And again, there is no treatment for endometriosis
This is a hopeless state to be in. From what I have seen, there are options, but only 1 doctor that I have had (out of 12 that I have had in the last 3 years) as been able to tell me what those options are. Following that logic only 8% of doctors have been educated well enough to educate on endometriosis.
What is Endometriosis?
Put simply, endometriosis is the growth of uterine lining outside of the uterus.
Similar to a cancer it embeds itself onto and into tissues, ovaries, your uterus, your colon, and anywhere inside your lower abdominal cavity it can get to. Unlike cancer, it seems to be confined to the areas in your abdomen and doesn’t produce the same risks for death.
It grows each month as your uterine lining inside your uterus does as it is regulated by the same hormones. The uterine lining has a chance to shed every month – this is the period. Endometriosis is locked in your body and unable to shed. Endometriosis produces more endometriosis – think of it like a weed.
Common symptoms of endometriosis include painful periods, cramps at anytime, heavy periods, irregular periods, ovarian cysts (called endometriomas, doctors like to call these chocolate cysts), and more. The truth is endometriosis impacts every body differently, some people are in severe pain and some people feel no pain. Pain tends to be a common symptom.
Infertility is also a common symptom. Endometriosis can impact fertility in a number of ways. For myself, this is how endometriosis has caused infertility:
- Fallopian Tubes – Growth of endometriosis outside and potentially inside my fallopian tubes, preventing an egg from passing through
- Uterus – An adenoma in the lining of my uterus – this is a growth of endometriosis that has penetrated inside the muscle of my uterus from the outside
- Ovaries – Both of my ovaries are currently encased in endometriomas – cysts formed of endometriosis. An egg could be released from my ovary, but it will stay encased in this endometrioma.
- Hormones – Endometriosis produces it’s own hormones. Because of that I have VERY high estrogen. I have what doctors call estrogen dominance, which means my body underproduces progesterone, a hormone needed to get your body to accept a fertilized egg and maintain a pregnancy.
Honestly, I am sure there is more but this gives a pretty hopeless picture for ever trying to get pregnant. For a long time, whenever I would get diagnosed with something new people would say “At least you have an answer!” To which I would respond (mostly inside my head) I had an answer, I had an answer like 20 doctor visits ago, I need a cure.
If you know someone that has endometriosis and is struggling with pain or infertility, you should know that the only things they are hearing – both online and from their doctor – sound hopeless. This is a disease that can fill you with despair.
How to treat Endometriosis?
Truthfully, there is not a pill you can take to make it go away like a bacterial infection. Pretty much everything recommended for treatment is to “manage symptoms” not the disease.
The only method I have seen that seems to have some proven results in removing the disease is excision – cutting out the endometriosis from each spot it has grown. This is a surgery. This is an intensive surgery. This is a surgery you need a good surgeon for.
This is the surgery that I will be undergoing (Lord willing and the chickens come home) on August 1st. I am hoping this surgery will do a lot to rectify the mess inside my body, but I also know nothing is guaranteed. The surgeons have told me it will be a very difficult surgery due to the extent of the disease AND scar tissue (from a previous surgeon that did not know what they were looking for/doing).
This is not an easy choice, but I believe it is one that God has led me to so I am going to walk in it until I am told not to.
For those that have endometriosis and are not ready to consider surgery – here are the options that have been recommended to me by various doctors. I am not recommending these – honestly if you asked me over a cup of tea, I would probably advise against these (again, not a doctor), but it is good to know what you will be hearing:
Birth Control
They will tell you it will trick your body into thinking it is pregnant and stop producing endometriosis. In my experience, throwing random hormones into your body is not a good idea. I was also unimpressed that they trade birth control brands as easy as gum – this is going into your body and altering your chemistry, more thought should be put into it than what is convenient.
Hormone Treatments
Like Arvekap – this is to suppress or stimulate a hormone that is thought to influence endometriosis. Again, random hormones in your body producing side effects. Again, this is not a cure but “symptom management.”
Naturopathic Medicines
This is one I wish I was able to explore more, but unfortunately my disease has progressed to the point that this will do nothing. If you find a good naturopath that has ideas on this, you should let me know.
Ablation
This is a smaller surgery where they go in and burn out the visible endometriosis. There are a few problems with this:
- Endometriosis embeds into tissues, most of it is not visible
- This requires a surgeon that knows what they are looking for – I know for a fact I had endometriosis growths when one surgeon went in to remove an endometrioma and ended the surgery with saying there was no visible endometriosis to remove. My current doctor (a very skilled surgeon with a reputation in endometriosis excision) laughed at this.
Hysterectomy
The removal of your uterus. This is often high on the recommendation list – unfortunately there are still plenty of women who have their uterus removed and have endometriosis symptoms because endometriosis is in the body cavity and endometriosis makes endometriosis.
I hope you are starting to get an idea of how hopeless it can feel to try and get pregnant with endometriosis.
- Almost every one of the treatment options is in direct opposition to trying to make a baby.
- It is a pervasive disease that spreads unimpeded
- Doctors are poorly educated and often prescribing treatment that has been proven not to work
- On top of all of this, you HURT, and probably carry some sort of hospital trauma if you have tried one of the options above
This is not okay.
A fun word we have learned in Greek is ντροπή (pronounced droh-pee), it means shame. The example we were given was to use it when someone tried to overcharge us just because we are American, but it is that word that comes to mind here.
- ντροπή on the American health care system
- ντροπή on the advancement (or lackthereof) of women’s healthcare
- and ντροπή on how doctors keep administering treatments that are known to be useless
But most of all, we should feel absolute shame that we are okay with letting women with this disease live in hopelessness.
This is ignorance and laziness at it’s very worst.
Endometriosis Removal
Like I said, on August 1st, I intend to go into surgery to try and remove a much of the endometriosis as possible. I intend to keep posting updates throughout my journey to educate and inform on what options are available and most importantly show three things to those who have endometriosis:
- There is hope.
- There are options.
- You are not alone.
Interested in Treatment?
I have been working with Dr. Mohling at Northwest Endometriosis and Pelvic Surgery. By the time I finally found her I had done enough research to know that she knew what she was looking at and what she was talking about. I would encourage you to reach out to their clinic.