This post was updated on March 30th, 2020
Endometriosis Symptoms, Treatment, Pregnancy & Diet
I became interested in endometriosis only recently when I learned that despite all the testing I’ve had over the past two years, endometriosis could have caused my previous two miscarriages, and if anything is going to stop me from having a baby in the next year, this will probably be the culprit.
If you are looking for an explanation of what endometriosis is, or are wondering why you or anyone else would care about it, then you’ve come to the right place because I have done a LOT of research and I am about to share all of it with you! So if you’ve found this blog article my guess is you want to understand this disorder with more understanding than just “oh, it has something to do with infertility and it’s bad”? If so, read on.
In this article, I’ll be discussing what endometriosis is exactly: what the signs and symptoms of endometriosis are; the possible risks of having it (infertility included); how to prevent it from getting worse, manage it; and what the treatment options are if you’re diagnosed.
Don’t worry. I’ll try to keep it as simple and understandable as possible. I was pretty overwhelmed, when I first started learning about it!
Women suffering any form of infertility let alone endometriosis may have developed an exceptional tolerance for reading through painfully medical articles, but you won’t need to do that here. I’ve tried my best to provide you with something comprehensive, yet digestible. I’ve taken out the “oh no that’s going to happen to me fear”, while retaining the facts with a measured approach.
While my infertility was caused by PCOS, as well as a few other unfortunate circumstances, if it helps you at all you are more than welcome to read or listen to my own personal story.
Endometriosis is really good at being a disease
Endometriosis is a really effective disease in women because it’s exceptionally common, and pretty much impossible to diagnose without surgery. If I’ve sparked your interest thus far then good, because as well as providing you with a comprehensive overview of this reproductive disorder, I’m also hoping to recruit you to spread the word about this remarkably pervasive, yet seldom discussed disease.
What is Endometriosis?
The most common question, “what is endometriosis?” Okay, you probably have a good enough idea of the female reproductive system, but just for reference, let’s have a quick refresher.
As you can see, the uterus has three layers: the endometrium (the inner lining), the myometrium (the middle layer that is made up of muscle), and finally the perimetrium (the outer layer). The endometrium is the tissue that is supposed to grow inside the uterus and not outside of it.
Endometriosis, in a nutshell, occurs when the inner layer (the endometrium) grows outside of the uterus instead of inside of it. In more rare cases, the endometrium may grow in the bladder, vagina, bowel, cervix, vulva, lung (yes, that extreme), arm, thigh and other locations (Mayo Clinic, 1998).
So what if I have bits of my womb growing in the wrong places?
So what exactly happens to your body when you have endometriosis?
The displaced tissue actually continues to function as it normally would have as if it were inside the uterus. With every cycle, it expands, bleeds, and breaks. The worst part is, because the blood from the misplaced tissue has no way out, it becomes trapped, opening up the possibility for cysts called endometriomas to form. This then irritates the tissue in the area, causing scarring and adhesions that can begin to bind organs together, and even in extreme cases, you get what’s called a “frozen pelvis” where everything is just glued together.
How Common is Endometriosis?
Endometriosis is WAY more common than you would have guessed. Endometriosis is one of the most common gynecological diseases with estimates of prevalence among the general population of women of reproductive age varying between 2 and 10% (B. Eskenazi, & M. Warner, 1997). This rate of prevalence rises to almost 50% in women with infertility regardless of whether or not they experience pelvic pain (C. Meuleman, et. al., 2009). According to Dr. Geoffrey Reid of the Liverpool Hospital in Sydney, these high rates amongst women who are asymptomatic make diagnosing the disease particularly problematic.
Endometriosis and Miscarriage
Endometriosis can affect fertility in a few ways. It can cause infertility by blocking the egg cells from entering the fallopian tubes, which keeps the egg cell and the sperm cell from combining to create an embryo. Endometriosis may also affect fertility indirectly by causing damage to the egg cell as well as causing miscarriages (Mayo Clinic, 1998).
So know you know about endometriosis and miscarriage… Do you want the good news, the bad news, or just some crappy advice?
The good news is that if you do have endometriosis, it’s doesn’t automatically mean you won’t be able to conceive. The bad news however, is that if you are able to conceive, the lesions that come with the disease emit high levels of prostaglandin, a hormone that causes your uterus to contract (or have spasms), putting you at risk of miscarriage and/or premature labor. It is for this reason that doctors advise patients with endometriosis to try and get pregnant while they are relatively young because the condition can worsen over time (possibly not the most helpful advice a doctor could give to most of us…)
Oh-wait, I’m not done yet
- puts you at risk of developing other menstrual medical conditions
- can make you more prone to pelvic infections, and uterine abnormalities
- is often associated with irritable bowel syndrome, and
- in very rare circumstances can even give you cancer (endometriosis-associated adenocarcinoma).
Yeah, so… Endometriosis sounds pretty blimmin horrible eh.
Irritable bowel syndrome (IBS) is very common in patients with endometriosis and could be a symptom of endometriosis. The Centre of Endometriosis Care (CEC) reports that intestinal cramping and painful bowel movements occur in approximately 25% of their patients; constipation occurs in 35% of patients and diarrhea occurs in more than 60% of patients (Centre for Endometriosis Care, 1990). These numbers reflect the patients with severe or crippling symptoms only and when patients with mild or moderate symptoms are included, these symptoms become even more common.
The good news for these patients however is that after treatment, most people will no longer suffer these symptoms. The sad news is that many women will go years because they were told they had IBS when in reality they had endometriosis – meanwhile suffering infertility, and years of pain before getting the diagnosis of endometriosis.
According to Dr. Ken Sinervo, the Medical Director of CEC, patients with endometriosis have a 2-3 fold increased risk of developing a few subtypes of ovarian cancer, and that some fertility medications that promote ovulation can increase that risk even more. But the overall lifetime risk of ovarian cancer is low to begin with and studies show that surgery can decrease this risk by 60-80% so this isn’t something we need to panic too much about. In these instances, it is important to recognize that endometriosis is associated with higher risk of ovarian cancer, but that endometriosis does not necessarily cause the cancer.
Endometriosis, is estimated to actually cause cancer via malignant transformation in a very small number of patients (I’ve seen quotes from experts of less than 1% but have been unable to find a better reference sorry).
While endometriosis is poorly understood in the wider medical community, the financial impact has been compared to that of diabetes and rheumatoid arthritis. There are many studies that have analyzed the financial costs to patients, with commonly accepted estimates putting the figure at around $3,000 in direct medical costs with an additional $6,000 from lost opportunity such as not being able to work as long each week due to the pain of the condition.
Now that I’ve answered your question, “what is endometriosis”, I bet you’re wondering what the symptoms of endometriosis are?
The symptoms of endometriosis aren’t clear and are very similar to other reproductive-related diseases. A lot of the symptoms mirror what you usually feel when you have your monthly period like cramps, loose bowel movement, bloating or nausea. Because of this, some women, particularly those with a high tolerance for pain, can go years before they are diagnosed.
Endometriosis Symptoms include:
- Severe pain in the abdominal area. It is easy to confuse “endometriosis pain” with the normal abdominal pain you feel when you have your monthly menstruation, but some women report that the pain is much more severe—sometimes, getting worse over time. Keep in mind, however, that the severity of the endometriosis is not directly proportional to the severity of the pain. More signs of endometriosis is that some people with severe cases of endometriosis might actually feel nothing at all, which makes the disease all the more difficult to spot.
- Pain during or after intercourse. Common symptoms of endometriosis pain is during intercourse. Sex should not be painful. If it hurts to do-it you should see a doctor immediately.
- Pain during bowel movement or urination while you’re on your monthly period.
- General fatigue, diarrhea, constipation, nausea, and bloating. Again, this usually occurs during your period.
- Because infertility is one of the effects of endometriosis, it follows that failing to get pregnant or having multiple miscarriages is also one of the symptoms of endometriosis. Sometimes, the only reason women find out they actually have endometriosis is because they learned that they were infertile…
These the most common signs and symptoms of endometriosis, so if any of these sound familiar get yourself checked by a doctor before jumping to any conclusions. I know there’s a tendency to google everything, but you’re always going to be better off with a diagnosis from a licensed physician, rather than Dr. Google (or even Dr SmartFertilityChoices.com!)
How to diagnose endometriosis
How to diagnose endometriosis? While severe cases may be visible on an ultrasound, a sure diagnosis of endometriosis can only be achieved via laparoscopy (keyhole surgery). Not until then can you be 100% sure that you actually have endometriosis.
Thanks to the difficulty of diagnosis, the lack of knowledge about the disease in general practice, in addition to the confusing symptomatology as described above, the average time for a diagnosis to be made is still 8 years from the onset of any of the symptoms of endometriosis (G. Reid, 2015). Ridiculous!
Endometriosis surgery just for a diagnosis…? Yes, it’s a thing. The thought and idea of having to undergo laparoscopic surgery just for a diagnosis of endometriosis is daunting and possibly even traumatizing. But here’s the reality: laparoscopy is actually a very minor surgical procedure and is nothing to be afraid of.
I’m no doctor, but let me try to explain what I understand about getting a laparoscopy:
A laparoscopy is normally considered a keyhole surgery—which means that surgeons don’t have to make large incisions in order to see what’s going on inside your abdomen. Instead, they make one small (or several) small incision(s) where they can insert the laparoscope (which is a small tube that has a light and camera), some surgical tools, and a tube for gas which allows the surgeon to operate better. Laparoscopy enables surgeons to see the extent, the exact location, and the size of the endometrial growths which can give you an exact diagnosis.
Endometriosis is generally categorized in one of two ways, depending on how up to date your doctor is: The Old Way, and …. The New Way. Having not been diagnosed with endometriosis myself (yet), it was only recently, when one of my readers was kind enough to get in touch that I became aware that the Old way had been improved upon (thanks Elle).
The Old Way of Classifying Endometriosis
Despite being relatively out-dated now, the Revised American Society for Reproductive Medicine classification for endometriosis: 1996 provides a helpful tool for understanding the development of the disease over time by a four stage categorization of severity:
Stage 1 Endometriosis
During the first stage, endometrial lesions can be found on the lining of the peritoneum. During this stage, there is still no scar formation.
Stage 2 Endometriosis
The second stage is marked by the spread of the lesions from the lining of the peritoneum to other places namely: the fallopian tubes and the ovaries. During this stage, there is still no inflammation. During the first two endometriosis stages, several endometriosis treatments can make the lesions smaller, or get rid of them completely.
Stage 3 Endometriosis
The third and fourth endometriosis stages are harder to treat and can cause infertility as these are the advanced stages of the disease. In stage three, the lining of your ovaries may already be covered in cysts. On top of that, adhesions or scar tissue may have also formed around your reproductive organs, and even your intestines (N. Lauersen & C, Bouchez, 2000.)
Stage 4 Endometriosis
In stage 4 endometriosis, the disease will be even more advanced, with thick scarring visible on all organs. During stage four, both fallopian tubes may also be blocked. Treating endometriosis during the latter stages is trickier and will rely on both surgery and medication to shrink the lesions.
[Images reproduced from Revised American Society for Reproductive Medicine classification for endometriosis: 1996, Fertility and Sterility 1997]
Short Comings of the Old Classification System
While the ASRM classification is still the most widely used staging system for endometriosis, this classiﬁcation system has some serious limitations, including not effectively predicting clinical outcomes of treatment, especially pregnancy rates in infertile patients (Palmisano et al., 1993;Vercellini et al. 2006).
Given that you guys are all-about getting pregnant; this short-coming is a pretty major bummer.
A Better System for Classifying Endometriosis
In 2010, the Endometriosis fertility index (EFI) was developed by Californian Fertility Physicians Adamson and Pasta, with objective of “developing a clinical tool that predicts pregnancy rates in patients with surgically documented endometriosis who attempt non-IVF conception”, or in plain-people speak: they devised a system for rating endometriosis severity that reflects the impact on fertility. NOW we’re talking!
Without wanting to get into the details of the assessment methods, I trust it suffice to say that the EFI has been externally validated for its accuracy multiple times (Tomassetti et. al 2013; Wang et. al 2013) and should be your go-to index for determining how serve your endometriosis is with regards to your fertility.
If you’re doctor hasn’t heard of the EFI and you’re the forgiving type, then send him or her this article reference. If on the other hand you don’t have the patience for getting them up to speed then perhaps you might be best to get the heck out of there and go find someone that has ☺
If you’re diagnosed with endometriosis, unless you have extreme confidence in your doctor (I never do), it’s often a good idea to get a second opinion. Not only is it worth getting a second opinion because of the cost of endometriosis treatment, but more importantly, there is what’s known in medical circles as the “endometriosis myth”.
Sometimes, doctors diagnose their patients with endometriosis just because they can’t pinpoint the exact reason for their patient’s infertility. Some doctors may also do this simply because insurance companies are much happier to pay for laparoscopy when they see a pathological diagnosis (S. Silber, 2005). That is to say that they would much rather that the money they used in paying for the laparoscopy covered by the insurance did not go to waste.
Misdiagnosis is a problem for you, not only because it wastes your money, but because it delays getting the proper treatment for your infertility. Ask anyone who has had trouble conceiving and they will tell you how frustrating it is to fail to get pregnant month after month, or even still – year after year as in the case of women like Jane Everywoman.
Getting to the Bottom of Things
Now that you have a general overview and what to look out for, let’s try and tackle the causes of endometriosis– well the hypothesized causes of endometriosis anyway…
Yeah, you read that right; to this day the causes of endometriosis remain largely unknown!
There are a couple of theories…
An immune system malfunction
Many experts believe that one of the reasons behind endometriosis is an immune system malfunction. Experts believe that 90% of women experience retrograde menstruation, the backward movement of menstrual fluids through the fallopian tubes and into the peritoneal cavity. During retrograde menstruation, the menstrual tissue attaches itself to the abdomen and begins to grows. In healthy women, the immune system stops this from happening and destroys the misplaced tissue before it has a chance to grow, however, for some women where this does not happen, endometriosis will develop.
This finding has led experts to believe that women who develop endometriosis have an immune system malfunction. Instead of blocking the misplaced tissue, experts believe that the immune system not only lacks the capacity to block the tissue, it actually releases some chemicals that might encourage the growth.
On the same note, it might interest you to know that this immune system malfunction can also create another type of infertility: researchers have discovered that the pelvic cavity and fallopian tubes of women with [endometriosis] contain higher-than-normal levels of the immune cells that attack viruses and bacteria. These immune cells not only destroy bacteria and viruses; they can eliminate sperm cells and embryos toovi.
Blame it on your Mom
Experts also believe that endometriosis may be 50% genetic, and 50% caused by environmental factors. Unfortunately, if this is the case, some families are naturally predisposed to developing endometriosis. That is to say, if your mother and grandmother have endometriosis, you are two-five times more likely to get it (P. Rogers, 2015)
Blame it on Monsanto
Exposure to certain chemicals like dioxin that is found in pesticide manufacturing (among others) also contributes to the formation of endometriosis. It has been noted that the higher the exposure to the chemical, the more severe the endometriosis (The Endometriosis Association, n.d.)
Blame it on Your Boss and Boyfriend
Lastly, another condition that can cause/worsen endometriosis is stress. Yip, that old chestnut… Cuevas et. al (2008) provided “evidence for the first time of the negative consequences of stress in the progression of endometriosis, most likely through an effect on the immune system” after conducting lab experiments on rats. Seguinot et. al (2014) has also conducted animal trials on endometriosis induced lab rats to demonstrate that stress can exacerbate the development of cysts (what a lovely thought). This is especially true if you have just experienced a loss of a loved one, are having marital problems, or are severely unhappy or overworked at your job. You guessed it, in order to keep your body healthy, you have to keep your overall well being in tip-top shape also.
Managing your endometriosis; Managing your life
Knowing all that you now know about endometriosis, is it possible to keep it from happening? Is it possible to manage it when you already have it? Fortunately, the answer is yes. Let me tell you how:
The key to management of endometriosis is healthy eating habits (sorry to disappoint you). It’s amazing how much can change when you stop eating certain foods, and start eating the right ones. So here are the guidelines to implementing your specialized endometriosis diet!
Say No To:
- Food that contain arachidonic acid. Okay—what? In simple terms, arachidonic acid is a fatty substance found in animal fat. This acid is contained in kidney, liver, and red meat. Arachidonic acid is not an essential part of your diet, so it’s okay to cut it out. Eating too much of it increases inflammation and consequently makes endometriosis worse.
- Fast food or processed food (enough said).
- Foods that are high in sodium content (salt), because this can make some of your symptoms, including abdominal cramps worse.
- High-fat dairy products – ice cream, cream cheese, and yogurt included unfortunately. While these are considered healthy food by most people, it could cause an overproduction of estrogen which can hasten the growth of your endometriosis.
Say Yes To:
- Carbs and lots of carbs. (See it’s not all bad news)
- White meat.
- Walnut oil—at least two tablespoons a day. It contains a fatty acid called GLA, which neutralizes the effects of the arachidonic acid, in turn making you less prone to inflammation.
If you already have been diagnosed with endometriosis, don’t fret, and repeat to self: “this is not a lost cause”. Significant progress can be made as simply as changing from your “regular diet” to an “endometriosis diet”. Eating the right foods can also help shrink the lesions altogether, and sometimes help you get rid of endometriosis completely (especially if it is diagnosed in the earlier stages of the disease).
As well as implementing your endometriosis diet, here are some other things you can do to help manage your endometriosis
Before we discuss the endometriosis treatment, here are things you can do at home that will help you manage the pain that comes with endometriosis:
- Warm baths. Hot compresses. Yes, already sounds relaxing right? The heat from the warm baths or the heating pads helps relax the pelvic muscles and therefore, reduces the pain that you feel from the cramps.
- Some studies also show that acupuncture for endometriosis can help alleviate the pain. To be sure that this could be right for you, consult your doctor but I am a huge fan of acupuncture and it’s benefits so definitely look into this option.
- Lastly, aside from getting enough rest, and eating healthy, regular exercise also keeps the pain at bay. This also promotes a healthy lifestyle, making your immune system stronger, and more capable of fighting off endometriosis.
Natural Remedies for Endometriosis Treatment
Of course, aside from managing your endometriosis, there are ways to treat it especially once it has reached levels of severity that can no longer be manageable by endometriosis life hacks. Here are some of the best endometriosis treatment approaches.
One of the popular ways to treat endometriosis is the traditional Eastern way—through acupuncture, and Chinese herbal medicine.
Like I said before, I am a huge fan and I have seen acupuncture in my own infertility journey make a huge difference in a number of ways.
Many people are still skeptical towards eastern medicine, but before you skip this entire section, hear me out. Traditional Chinese Medicine (TCM) has been around since way before western medicine was developed. The increasing acceptance of TCM as a legitimate medical intervention is a result of the already large, and continually increasing scientific body of evidence demonstrating its efficacy for certain conditions including endometriosis.
Several scientific studies have concluded that acupuncture is a safe, effective and well-tolerated adjunct therapy for endometriosis treatment of related pelvic pain (P.M. Wayne, et. al., 2008), (K. Rubi-Klein, et. al., 2010), (E.S. Highfield, et. al., 2006). There are so many studies published on this topic in fact, that I just decided I might have to do a separate blogpost on this topic, so keep an eye out for it in the near future!
Acupuncture for Endometriosis?
Now, you may ask—what happens during acupuncture? And what has Chinese herbal medicine have to do with any of it? Well, acupuncture and Chinese herbal medicine actually work hand-in-hand. Acupuncture is used to improve blood flow while herbal medicines can help correct hormonal imbalance. What typically happens when you come in for a TCM treatment is a session of acupuncture—where small needles are placed in various areas of your body, and left for 20-45 minutes depending on your needs. You then will be given a prescription of herbal medicine that complements the acupuncture.
A big part of TCM is its emphasis on one’s lifestyle. From taking more time off from work to reduce stress, getting a good night’s sleep, drinking lots of water, and practicing mind and body exercises like tai chi, yoga and meditation, it’s a completely holistic approach to treating your endometriosis. And I for one am a living example of how much changing your lifestyle can work as endometriosis treatment as well as a number of health problems – so there are many other benefits besides just treating endometriosis that you will gain from doing these things!
Choosing TCM has many benefits—the most important is that if you choose to only use TCM it is far more affordable and less invasive compared to endometriosis surgery, or taking prescribed medications from doctors.
This treatment also has no side effects as it is one of the best natural remedies for endometriosis. Lastly, because the treatment requires an overall lifestyle change, like I have previously emphasized your health and wellbeing in general will drastically improve as well.
Keep in mind too, that TCM can be a complementary solution to western medicine, as I mentioned above, meaning that it is an “AND” decision, rather than an “OR”. TCM is commonly used in conjunction with Western Medicine for its unique ability to reduce endometriosis pain so why choose one over the other, when you can have both?
As mentioned earlier, treatment will greatly depend on what stage your endometriosis is in. If your endometriosis is in the first two stages, the doctors will prescribe various hormonal treatments in order to lessen the amount of estrogen in your body. The goal of these treatments is to decrease the levels of the estrogen in your body to stop the lesions from growing.
The following are the various hormonal treatments your doctor may prescribe to you:
Hormonal contraceptives – i.e. birth control pills, and birth control patches: Taking contraceptives can shorten a woman’s menstrual cycle, thus reducing the endometriosis pain.
Gonadotropin-releasing hormone (GnRH): Administering GnRH agonists and antagonists also helps in treating endometriosis. These hormones lower estrogen levels in the body and simulate what occurs during menopause by stopping the menstrual cycle altogether. A lack of estrogen in the bloodstream stops the growth of the endometrial tissue, causing it to shrink—and possibly disappear completely. After medication, your period will return. On the down side, however so could the unwanted endometrial tissue.
Injectibles: Another option you may be prescribed is an injectable birth control hormone similar to progesterone that when given every 12 weeks, stops your monthly cycle, along with the subsequent growth of endometrial tissue. Before consenting to treatment however, take note that potential side-effects include depression, and weight gain (are there any medications out there that DON’T have these blimmin side-effects?)
Steriods: Doctors can also prescribe a synthetic steriod that lowers estrogen levels and increases androgen levels putting the body in a menopause like state. As well as stopping the ovaries monthly ovulation, this steriod shrinks endometriosis growths and reduces the pain it can cause. This endormetreiosis specific steriod may be harmful to babies while in utero so this drug may not be a wise choice if you are trying to conceive.
It is expected that after taking these medications for six to eight (6-8) months, the state of your endometriosis will improve sufficiently to create a window to attempt a pregnancy.
Now, if your endometriosis is at its third or fourth stage, more advanced treatments are going to be required to treat it, including surgery.
The most common surgical procedure to treat endometriosis is laparoscopy — yes the same type of procedure we discussed earlier when we were talking about the diagnosis. The difference this time around though is that, instead of just looking at the extent of the damage, the surgeon also creates other small incisions to remove the unwanted tissue that has formed. From what I hear, getting up to four of five incisions is pretty typical.
Some surgeons also use lasers to vaporize the endometrial lesions. If this doesn’t suffice, they may also resort to mixing hormone therapy and surgery to first shrink the lesions, making it easier for them to be removed.
I’ve been given the strong word by friends that have suffered endometriosis to make it clear to you that while some OB-GYN’s can technically perform laproscopy for endometriosis, “being able” does not necessarily qualify them to do a great job. The first thing about surgery is the technique used, which absolutely has to be excision. Other techniques, performed by “able but not necessarily awesome” surgeons may actually increase scar tissue and adhesions. Picking the wrong surgeon, someone who doesn’t specialize in endometriosis excision, can lead to the need for repeat surgeries.
The good news is that after surgery, some women are automatically able to conceive. According to Dr. Ken Sinervo, Medical Director and Excision Surgeon at the Centre for Endometriosis Care,(Centre for Endometriosis Care, 1990-2011) any doc that says you will likely need repeat surgeries every 6-12 months is a quack and you should leave immediately. 82% of our patients only need one surgery, 2-4% need a 3rd.
After surgery: Endometriosis and Pregnancy
However, for extremely severe cases, the mixture of endometriosis and pregnancy results declining rates of success after surgery. From the number of women who try to get pregnant after having surgery, the success rates only range from 1.25-2% per month. Women who have severe endometriosis are also usually resistant to treatments like artificial insemination, and ovarian stimulation plus intrauterine insemination however pregnancy remains possible via IVF so you should not give-up hope if you fall within this category! (Advanced Fertility Center of Chicago, 1996-2015)
Laparoscopic Surgery can Reduce your Fertility
While laparoscopy can remove endometriosis, it can also compromise your fertility. So this isn’t the endometriosis cure? Well, when you have ovarian endometriosis—when endocysts grow inside your ovary—doctors are going to remove the cysts. 50% of the women who have undergone laparoscopy will be able to conceive naturally afterwards but what about the other 50%?
This question prompted Dr. Geoffrey Reid of Liverpool Hospital in Sydney Australia to conduct studies aimed at answering the question: “what damage has the surgery done to the ovary in terms of its future response to the IVF process?”
To answer this, he explains that since 2009, Anti-Mullerian Hormone (AMH) has been available as a low-cost blood test used to measure egg numbers within the ovary. This then shows how well the patient would respond to the IVF treatment.
Using this technology, researchers have compared the AMH levels of patients before and after their operation and found some shocking results. According to their studies, if you operate on a single ovary, AMH levels fall by 50%; and if you operate on two ovaries, they fall by 60-70% – A huge drop in the responsiveness to IVF and the egg number in the ovaries!
What does this mean? Well, lower AMH levels means there are fewer eggs available to use and transfer, and the response to IVF after surgery will be extremely poor.
So, what then? Well—again, it’s not all bad-news. Dr. Reid’s recommendation is to do a pre-operative check of AMH levels. If after the test, the results show that it’s on the average or low side, you should really consider storing some embryos or eggs prior to surgery just to make sure you still have some eggs to use afterwards if you need them. This is probably the most important thing I’ve mentioned in this blog post.
Obviously, if you’re still single, then storing eggs rather than embryos is going to be the most suitable option for you. That way, in the future when you have met the man of your dreams and you’re ready to start your family, but you’re having trouble because you don’t have many eggs available as a result of the endometriosis surgery you had many years prior, you’ll still have some good ones in the freezer, which you can have fertilized with your partner’s sperm and then inseminated in an IVF clinic
Sclerotherapy – The “Not Surgery” Solution
As a result of the significant risks and short-comings of laproscopic surgery, other minimally invasive therapies are emerging and growing in popularity.
Ultrasound-guided aspiration and sclerosis (a.k.a sclerotherapy) is a technique that has proven effective and cost-efﬁcient for benign cysts located in other organs such as the thyroid, liver, kidney, and spleen (Okagaki et. al 1999) and is now being used by some fertility specialists to remove endometrioma with great success rates.
What is sclerotherapy
During sclerotherapy, under local or general anaesthesia and using transvaginal ultrasound guidance, a large needle is used to withdraw fluid from inside each endometrioma, before directly injecting a similar volume of alcohol. After a period of around 10 minutes, the alcohol is then completely withdrawn leaving the endometrioma in a drunken, dying state. The lesion then disappears 6-8 weeks after this severe booze binge leaving the patient endo free, and fit for pregnancy.
While this all sounds rather unpleasant, post-procedure reports on the “0-10 pain scale” put it at 2.7 on average (Yazbeck et. al 2009) which is nothing compared to what you get with surgery.
Sclerotherapy success rates
Recurrence rates after sclerotherapy of 12% were recently reported by a Spanish team of Gynecologists (Garci’a-Tejedor et. al 2015), which compares favorably to the 15-30% accepted recurrence rate for laproscopy (Koga et. al 2006; Liu 2007). Yazbeck et. al (2009) 8 reported a 13% recurrence rate, and improved pregnancy rate for women that received sclerotherapy for endometriomas prior to IVF compared with women who received laproscopic surgery.
With these findings demonstrating the potential for this alternative treatment to deliver as-good, if not better results, sclerotherapy certainly seems worth a look-in before going under the knife. In fact, some of the better fertility clinics now prefer sclerotherapy to surgical management prior to IVF for women with endometriosis.
A last resort is a hysterectomy. The finality of this solution makes it only an option for women who do not plan to conceive anymore.
When a hysterectomy is performed, the doctors remove the uterus and the cervix. This does not a guaranteed endometriosis cure, as it can manifest and grow in other organs.
Lastly, it’s so important to see someone you’re not only comfortable with, but also someone you can trust to treat whatever ailments you’re having.
This is especially important because there are many doctors out there who claim to be specialists but are not. Given this, how do you know what to look for in your doctor? Here are a list of questions you can ask your doctor—(thanks again to Medical Director, Dr. Ken Sinervo, for the advice!)
- Ask your specialists if they excise (cut the endometriosis out) and if so, what energy they use to do it.
- Find out how they treat endometriomas, and how many times they’ve done so.
- Find out what they would do if there was endometriosis on the bowel or bladder that was invasive, and if they have ever performed bowel resection and bladder resections.
- Ask them how often they open patients up? Top surgeons will only need to do so in less than 1 in a 1000 surgeries.
- Lastly, find out how often they perform surgery, and what their surgical load is. A top endometriosis surgeon will be too busy to be delivering babies, so this is a great red-flag.
Finally, one last thing to note is that if a surgeon turns you away because you are too old (or too young), find another one. Anyone with endometriosis can have an excision done; if a doctor turns you away then good riddance! It is then our job as patients to find a better specialist we can trust to help us out.
So if you’ve made it this far, you really are a disciplined reader and you now know as much about endometriosis as I do ☺ If you suspect, or already know that your infertility may be caused by this exceptionally common health issue, hopefully you’ll have a better understanding of the symptoms, diagnosis, and treatment options available to you. You’ll also know that you are DEFINITELY not alone.
If you have endometriosis, regardless of the stage of development it’s in never think that it is a lost cause. By staying positive, doing what you can, and educating yourself you’ll be giving yourself the best chance possible.
The journey to motherhood is not over, until you decide is. Please take good care of yourself and if you have any other questions about endometriosis, or any other fertility related issue, please don’t hesitate to ask. Leave a comment below, or send me an email, and let’s talk about it.
Kym Campbell is a Health Coach and PCOS expert with a strong passion for using evidence-based lifestyle interventions to manage this disorder. Kym combines rigorous scientific analysis with the advice from leading clinicians to disseminate the most helpful PCOS patient-centric information you can find online. You can read more about Kym and her team here.
p.s. Here’s an image I put together of one of my favourite quotes – never lose faith!
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