Endometriosis is a condition that affects the female reproductive system and occurs when endometrial tissue that is typically only found inside of the uterus begins to develop outside of the uterus. Endometriosis affects roughly 1 out of 10 women in the US, and an estimated 176 million women worldwide. The main symptoms of endometriosis are pelvic pain and infertility.
This endometrial tissue is the inner lining that thickens during the menstrual cycle and is shed through menstruation if a pregnancy does not occur. This is the same tissue that a fertilized embryo ultimately implants itself into during a pregnancy. With endometriosis, the endometrial tissue can be found growing on or around the ovaries, general pelvic region and abdomen, or less likely in or around the fallopian tubes, vagina, and bowel.
What is especially problematic with this endometrial tissue overgrowth is that although it is outside of the uterus, it is still impacted by the same hormonal changes that impact the endometrium inside of the uterus during the menstrual cycle – it still thickens and then sheds. When this tissue is outside of the uterus, however, it cannot break down and expel through the vagina during your period like typical endometrial lining. It instead breaks down wherever it is implanted in the pelvic region. Over time, this monthly shedding and bleeding can cause scar tissue and cysts.
The symptoms and the severity of endometriosis may vary from moderate to severe. Women with endometriosis may experience some of the following symptoms:
Painful periods that are not minimized by over-the-counter pain relievers
General pelvic pain
Recurring episodes of sharp abdominal pain
Pain during intercourse
Painful bowel movements or urination, especially during menstruation
Risk of infertility in about 30-50% of affected women
It may take some women several years before receiving a confirmed diagnosis. There is evidence to suggest endometriosis is hereditary, so talk to the women in your family to see if they experience any of the same symptoms.
Women with endometriosis may likely be affected by persistent symptoms throughout the duration of their reproductive years, from the onset of menstruation through menopause. Although there is no available cure for endometriosis, some of the symptoms may be managed.
Options for treatment vary from simple measures such as heating pads to provide some pain relief to laparoscopic surgery (through the belly button) for deep-excision to carefully remove the tissue growth and cysts wherever they may be implanted outside of the uterus. Endometriosis can be implanted deep below the surface wherever it is found. If pursuing surgery, is important that the surgeon remove the entirety of the growth in order to provide relief.
Low-dose oral contraceptives, over-the-counter nonsteroidal anti-inflammatory drugs (including ibuprofen and naproxen), a hormonal (not copper) IUD, acupuncture or changes in diet could help alleviate some symptoms as well. Some evidence suggests that an anti-inflammatory diet could be one source of relief in managing the symptoms of this disease. A program such as the Low-FODMAP Diet most commonly used to minimize symptoms of irritable bowel syndrome could be an option.
Endometriosis and Fertility
30-50% of women with endometriosis may struggle to conceive. Early diagnosis and treatment can be beneficial for patients concerned about their fertility. A fertility specialist can assess fertility based on blood tests, ultrasound, and may also perform a hysterosalpingogram (x-ray of uterus and fallopian tubes). Surgical excision of the disease can improve fertility by restoring reproductive anatomy and reducing inflamation. Fertility treatments, such as intrauterine insemination (IUI) or in vitro fertilization (IVF) can improve fertilization and implantation rates. Fertility drugs may be needed to help the uterine wall maximize conditions that facilitate the implantation of an embryo.
If you feel like you may have endometriosis, it is important to have an evaluation by your doctor to determine a diagnosis. It may be helpful to chart what you are experiencing during which days of each menstrual cycle to help determine patterns that could be useful for aiding diagnosis. A diagnostic laparoscopy with a pathology report to confirm the biopsy tissue is the only way to definitively verify endometriosis.
I decided to have a fertility consultation a few months after I turned 30. I didn’t have an actual reason to and no one encouraged me to – I just thought it was one of those due diligence things to do.
I didn’t think much of it; I thought I’d walk in, check it off of my list and move on for a few years and not think about fertility again until my romantic situation significantly changed i.e. married and ready for a family! Both of which were far from the reality of my current circumstances.
Unfortunately for me, however, during that consultation I discovered I actually do have a fertility issue – BUT very fortunately for me, I caught this early enough where I still have options.
Egg freezing can be a tough decision – the process certainly forces you to come to terms with what you honestly hope your family goals one day may be. It is a hugely emotional, psychological and financial decision but also an incredibly hopeful one.
Despite how scary or uncertain this process may feel, and how bizarre it might feel to go to extreme lengths to protect your fertility when you are very actively trying NOT to get pregnant, it is a means that could provide an option to have a family down the road. I don’t have a clue what that family will ultimately look like but I do know I want some kind of family of my own one day…hopefully with a partner that wants the same. And for that idea, this process has all been well worth it to me because it gets me closer to having a chance. I’ll continue working and will recover my investment – but my opportunity to take action in this won’t be around forever.
The decision to move forward with treatment could be difficult and complicated but the process itself is actually fairly straightforward.
The absolute first thing to do is to come into the Reproductive Endocrinologist’s office for a fertility consultation. This is the starting point to just see where you stand and learn what you’re working with. The consultation includes some simple blood tests, a vaginal uItrasound (easy) and a chat with one of the doctors to review the results.
After a brief discussion with my doctor regarding my current situation and my eventual family goals we got right to it and started with the vaginal ultrasound. The experience was not dissimilar to a standard gynecologist visit if you added in a monitor to see your uterus and your ovaries. It was certainly the first time I ever saw what my uterus looks like! An important part of this scan is to count the number of follicles or ‘ports’ the eggs could develop from in the ovaries. This will ultimately determine how many eggs you could possibly get from an egg retrieval in a medicated treatment cycle.
I had some preliminary blood work already drawn at a previous gynecologist visit and had the results ready for my consultation with my doctor. The one that was most impactful for me was AMH (Anti-Mullerian hormone) which tests for ovarian reserve, or quite simply how many viable eggs you have left (the older we get the fewer quality eggs we have to work with and the lower the AMH result). We went right into reviewing my results and speaking about my options. Based on my circumstances and very low AMH (indicates diminished ovarian reserve), I decided to start treatment right away.
After meeting with the doctor, I met with my IVF coordinator – she is the gal that oversees your treatment process and protocols and runs point on all of the logistics (e.g. how and where do I buy the medication from?). She’s your first point of contact for ALL of the questions you’re about to have.
The official date you can start treatment is calculated from the date of your last period so you’ll have an idea of how much time you will have to get everything sorted before you begin.
Before you can officially get started there are some easy housekeeping items to be done. Your coordinator will stay in touch with you to make sure you have everything you need completed so you can start your treatment on time, as it is sensitive to where you are in your menstrual cycle.
I had to request some additional blood test results and some specifics of my medical history from both my primary doctor’s office and my gynecologist’s office in addition to getting one final blood test.
There is an online class that covers the basics of the treatment protocols and also speaks to the medication you’ll be taking and how the injections work. There is also a digital consent form.
The treatment needs to be paid in full before the official start of your treatment but there is a team of very helpful financial coordinators that can help you navigate the process and explore your financial options.
Your coordinator will help you order and purchase all of the medication and supplies you’ll need to begin. This part could feel overwhelming initially (syringes and needles and alcohol prep pads galore) but within a few days you’ll get the hang of it and feel like a pro.
Once all of the logistics are taken care of, you’ll come into the office for your first monitoring appointment. This appointment will confirm that you actually are exactly where you were expected to be in your menstrual cycle and that you’re ready to kick off your treatment cycle.
The gist of it goes as follows: You will need to stay local to the New York office for about 2 weeks until your treatment completes. You will need to head to whichever office is most convenient for you every other day or so of the cycle to check in. These appointments are always first thing in the morning – between 7:00 AM – 8:30 AM.
The visits are quick – about 15-20 minutes total. After checking in with the front desk you’ll take a blood test and also see a doctor for a vaginal ultrasound each time you come in. The blood tests check hormone levels and inform how your body is responding to the medications while the ultrasounds let the doctor see exactly how your ovarian follicles are progressing day to day with the treatment. You’ll leave and get on with your day, and your nurse will give you a call and shoot you an email later in the afternoon to let you know exactly what to do next.
During her update, the nurse will tell you which medications to take morning and night and exactly how much of each to take. You will give yourself injections that evening and the following morning or until your next monitoring appointment. The nurse will contact you to give you a new set of instructions after each appointment.
You continue on with monitoring appointments and injections as your body progresses with the treatment until your eggs are mature and you are ready for your egg retrieval – when the eggs are actually taken out of you – typically about 10-14 or so days after you had that initial monitoring appointment to start your treatment cycle. At this point you will stop taking your usual injections and instead take a ‘trigger shot’ that will prepare you for the retrieval procedure within 36 hours of taking it.
On the morning of your retrieval you will make your way into the office at your scheduled time and after some prep and consent forms you will be led to the surgical center in the lab. You will be under general anesthesia during the 15 or so minute procedure and will wake up in the recovery area with a friend or partner waiting there to take you home.
I’d say the whole process was more stressful than painful, and overall not nearly as scary or uncomfortable as I was anticipating it to be. Within two weeks you are completely done start to finish.
I napped and relaxed the rest of the retrieval day and was gingerly back to work the following day, glad knowing I had taken action and did the one thing I could do to protect my idea of having a family one day in the future.
Now I can actually move on and try not to think too hard about my fertility until I’m finally ready for that family.