How does endometriosis affect fertility?
Endometriosis can affect a woman's fertility in a number of ways:
physically blocking, distorting or preventing the reproductive organs from functioning properly
blocked Fallopian tube(s) preventing an egg from reaching the uterus. A hydrosalpinx is a condition that occurs when the fallopian tube is blocked and fills with serous or clear fluid near the ovary. The blocked tube may become substantially distended. The condition is often bilateral (both sides) and the affected tubes may reach several centimeters in diameter. A fallopian tube filled with blood is a haematosalpinx, and with pus a pyosalpinx.
"kissing ovaries" where the ovaries are stuck together due to adhesions caused by endometriosis
endometriomas - endo cysts on the ovaries can damage ovarian reserves
uterus attached to other organs like the bowel due to adhesions caused by endo
chronic inflammatory response / toxic fluid in the pelvic cavity creates a hostile environment for an embryo
avoidance of sexual intercourse due to pelvic pain
increased oxidative stress levels which may lead to epigenetic changes
Is everyone who has endometriosis infertile?
It is estimated that 60-70% of women with endometriosis are fertile and can get pregnant spontaneously and have children. Therefore, women not wanting to get pregnant should discuss their options for contraception with their doctor. (endometriosis.ie)
Endometriosis surgeons may use the rASRM staging system to describe the extent of a patient's disease. There are 4 stages. Be aware that stages do not correlate with pain levels. The system was developed with endometriosis fertility patients in mind and has its limitations.
The following information is taken from a Center for Endo Care article on infertility:
"Without question, endometriosis remains a top cause of infertility, gynecologic hospitalisation and hysterectomy. In fact, although recent data [Missmer et al.] indicates the risk may be less than originally suspected, it remains a top cause of female primary and secondary infertility, prevalent in 0.5%-5.0% of fertile patients and 25%-40% of infertile patients. Studies indicate that infertile women are 6-8 times more likely to have endometriosis than fertile women. However, early intervention can reduce morbidity, infertility and progressive symptomatology, even in the most advanced disease stages.
....only one study that looked specifically at the chances of conceiving in women with different stages of disease:
those with stage I and II had a 60% chance of conceiving without surgical treatment
those with stage III had a 15-20% chance of conceiving without surgical treatment
those with stage IV did not conceive in that study (but we realize that even with stage IV, a small percentage will conceive, likely less than 5%)
Other studies have also found that conception rates increase following surgical treatment of endometriosis. For those with stage I-II, the chances of conceiving after excision is between 80-85%, almost the same rate as if you did not have endometriosis. Those with stage III will have a 70-75% chance of conceiving and those with stage IV is between 50-60%.
In terms of 'complications' related to endometriosis, as far as actual pregnancy is concerned, the good news is, by and large, most individuals will not have significant issues. Indeed, studies indicate there is a very high overall rate of live birth children - 95.8%...However, there does exist a small risk in some individuals of complications such as spontaneous hemoperitoneum in pregnancy [SHiP], antenatal bleeding, pregnancy-induced hypertension, preeclampsia or preterm birth."
You can read specifically about endometriomas by clicking the article link.
I've been diagnosed with endometriosis, how can I improve my fertility prospects?
expert excision surgery of all endometriosis
identifying if you have other conditions such as PCOS, fibroids, or an endocrine disorder like hypothyroidism and attending to those conditions too
chromotubation (instilling dye into the uterus to see if it comes out the Fallopian tubes) done during surgery to see if the Fallopian tubes are clear to allow an egg to travel through them
ensure you are consuming enough essential vitamins and minerals
getting enough sleep
reducing stress as much as possible
Should I have IVF or excision surgery - which is better?
Dr Gaby Moawad has shared this graphic illustrating how removal of endometriomas via excision can increase pregnancy rates.
Excerpt from article by Casey Berna, endometriosis advocate:
"With endometriosis, infertility, and recurrent pregnancy loss, one size does not fit all. Each struggling patient deserves an individualized approach, as well as a complete understanding of potential challenges faced. A simple, thorough clinical history can help a provider suspect endometriosis from the start. Physical symptoms such as painful periods, pain with ovulation, painful intercourse, gastrointestinal and bladder issues, back and leg pain can be indicators that endometriosis is present. A family history of endometriosis, infertility, or pregnancy loss can also be indicative of potential disease, as patients are 7x more likely to have endometriosis if a family member struggled with it. Upon examination and testing, patients may also present with poor egg quality, low AMH for their age, and a restriction of blood flow to the ovaries and the uterus.
While endometriosis is not an autoimmune disease, Dr Andrea Vidali’s research has found that many patients have associated autoimmune diseases or early positive AMA indicators that could eventually develop into autoimmune diseases. In particular, associations are high with Hashimoto’s Thyroiditis, Rheumatoid Arthritis, Lupus, and Antiphospholipid Syndrome to name a few. Changes seen in endometriosis patients on the cellular and immune level, such as an increase in inflammatory factors (Tc17) and significant disruptions in the amount of Treg and Natural Killer cells can have a devastating impact on fertilization and implantation. These factors can further complicate fertility and pregnancy for patients trying to build their families and cannot always simply be addressed by IVF.
The good news is that there are interventions that have shown to be successful for those struggling with the devastating physical and emotional impact of endometriosis, infertility and recurrent pregnancy loss. Wide excision surgery performed by an endometriosis expert can remove endometriotic lesions from all impacted organs, thereby removing the source of inflammation and inflammatory factors, improving egg quality, fertilization, implantation and overall quality of life. For those who may still struggle with fertility and pregnancy loss after excision, immunotherapy treatments can help regulate autoimmune and cellular factors associated with challenges ranging from implantation and carrying through to helping patients have a successful pregnancy and even delivery with less complications."
Egg freezing Q & A with Rachel
Rachel from Northern Ireland was advised by her excision surgeon to have her eggs frozen before her surgery in November 2020 in an effort to help preserve her fertility. She had a large endometrioma of 15cm on one ovary, in addition to small endometriomas on her other ovary. Her surgeon, Mr Shaheen Khazali, was not only able to completely excise her endometriomas, but was also able to save both her ovaries. Rachel had her egg freezing carried out at Belfast Fertility/GCRM.
Is there a cost difference between having your eggs frozen in London, and having it done in Belfast?
When I looked into it the clinic in London was actually more expensive yes but I personally chose Belfast because of the practicalities. The process takes a couple of months with lots of going backwards and forwards for blood tests, scans and appointments. It wouldn’t have been possible for me to do it anywhere except Belfast just for that reason. During the process you’re monitored very carefully so a lot of the appointments have to be face to face. I actually looked into possibly going down South for egg freezing as their prices aren’t as high as NI, but that is because some of their medication costs are covered which as far as I know doesn’t apply if you live in Northern Ireland.
What are the costs of egg freezing? Did the hormones required cause your endometriosis to flare up?
It was just under £4500 for me in total, but it depends on the dose of hormones prescribed to you individually as that alters the price. The initial consultation and testing was £480, everything after that, including the actual egg freezing process was £3127 (including first year of storage) and the hormone medication ranges from £600-£2300 depending on dosages. The annual storage fee is £350 (but that doesn’t need paid until next year as first year is included). Those are the prices I paid in October 2020. The hormone medication didn’t cause a flare up for me or make my symptoms any worse, but I know it can differ for each person. The actual egg collection caused a flare up for me but those difficult few days were definitely worth the long term gain in my opinion.
How do you retrieve your eggs when you are ready to have a baby?
You phone the clinic and tell them you are ready to start the process, if you need any further assisted fertility procedures of course these could even be done at the same clinic.
Now that you've had your eggs frozen, does this give you extra reassurance about your fertility prospects in the future?
I think it does give me reassurance because I know that I've explored all options, and egg freezing was just one of those options, which I decided to go ahead with. I would say as well that Mr Khazali told me that removing my 15cm endometrioma would affect my ovarian reserves - but at that point in time, regardless of the egg freezing, my quality of life was more important due to my high pain levels.
Do you feel that egg freezing is worth the financial investment?
It's a big financial investment to consider but Mr Khazali encouraged it so much and I trust him, then I knew it was the right move to make.
It was worth it to know I've done the best for myself, I felt that if I didn't I would regret it in the future. I am currently 25 years old and I've always known that I would like to have children, however the means through which I could have children in future has never bothered me - I'm open to adoption, egg donation and so on. So even though I have frozen my own eggs I was always mentally prepared that it may not have been a viable option before it actually happened due to the extent of my endometrioma and endometriosis.
Should women who are not going to see an endometriosis specialist and just being treated by a general gynaecologist have their eggs frozen?
When I had consultations in Belfast, the doctors did not feel my endometrioma was anything serious, and said I would not need to freeze my eggs [Rachel's endometrioma was 15cm which was easily seen on imaging scans, most endometriomas are 3-4cm, Rachel could actually see and feel the endometrioma through her tummy]. However seeing Mr Khazali, an endometriosis expert in London, who told me my endometrioma was substantial and definitely needed to be removed, made me realise I could trust his expert opinion as he actually told me the truth and also reassured me that he would try his best to preserve my ovary, but that I should also freeze my eggs as an insurance. The consultant in Belfast told his registrar to tell me he would take "most of the endometrioma" away during surgery, if I had my lap with him. He wasn't even prepared to excise the whole endometrioma.