With the start of the new year, we begin a new collection of articles. This month, we are focusing on endometriosis. Endometriosis is an enigmatic disease that affects up to 15% of women of reproductive age, yet there is no cure for it currently, only treatments to attempt to alleviate the existing symptoms. Endometriosis has significant effects on the social, occupational, psychological, and physiological lives of women.
This week we had the pleasure to chat with Kaleela, an absolute fighter and advocate, who shared her journey and life with endometriosis with us.
At 30 years young, Kaleela just had her first excision of endometriosis 7 months ago and wants nothing more than to fulfill her dream of having children. But let’s take a step back and look into how it all began.
Like so many other girls, Kaleela started using the pill at 15. Her mum, concerned that her teenage daughter would have to endure the same painful periods she had experienced, felt that the pill would be a good solution. 2016 was the year when Kaleela and her husband decided to get off the pill and start to pursue their dream of a family. With the related hormonal changes, not only did she have to say goodbye to her peachy and glowy skin, but some abdominal pain and diarrhea during her period started to become the norm. In seeking some answers about her periodic abdominal pain, her family doctor diagnosed her with irritable bowel syndrome (IBS). Three years later, severe cramps and pain that were no longer treatable with pain medication started to become regular during her period. On top of that, non-period related pain was gradually added to the menu of discomfort.
2019 was the start of big changes, losses and uncertainty for Kaleela. She and her husband moved to the USA from their home country in South Africa, and after three years of trying for a baby, Kaleela finally became pregnant in July 2019. But it was not meant to be; the baby (Aspen Lee) died around 6 weeks of gestational development, but Kaleela only found out some weeks later during her first routine ultrasound. She had experienced a missed miscarriage and had to make the heartwrenching decision to force her body to let go of the unviable pregnancy by taking medication to induce the completion of the miscarriage.
A few days after the miscarriage, the horror story of excruciating pain began: she found herself unable to stand up on her own, excessively bloated and with the feeling of her abdomen exploding and serrated knives twisting in her pelvis and abdomen that pain killers could not relieve.
Days five and six of each menstrual cycle after the miscarriage quickly became her worst days. Her whole digestive system would shut down and the pain would crescendo to a 10 out of 10 and would last longer with every cycle, up to the point of her experiencing 10 out of 10 pain in her pelvic region, bladder and bowels for 40 hours straight during her period. This was followed by days of painful bloating and constipation that made it almost impossible to move alone, eat or sleep.
In the hopes of finding an answer and an end to her pain, Kaleela eventually contacted her gynecologist. Based on the information that her digestive system would shut down during her period, the gynecologist sent her to a gastroenterologist. This is where Kaleela was introduced to the possibility of an endometriosis diagnosis for the first time!
The gastroenterologist was confident that nothing was wrong with Kaleela’s digestive system, because the pain Kaleela described was only during her period; he was thus sure that endometriosis was the culprit and sent Kaleela back to her gynecologist. Back at the gynecologist, a pelvic ultrasound did not provide a sufficient image to visualise an abnormality in her uterus, and an MRI was thus ordered to get a clearer picture of things.
We all know these fascinating images that show us the insides of our bodies. If someone doesn't know what to look for on these images, it just looks like a map in different shades of black, grey and white. It is important to note that endometriosis does not always show up on imaging studies, but Kaleela’s endometriosis was so bad that her gynecologist saw it right away and was humble enough to admit that her case was beyond his own capabilities to treat. He thus referred her to an endometriosis excision specialist. The MRI also revealed adenomyosis in her uterus (a condition similar to endometriosis, but where endometrial-like tissue grows inside the muscular walls of the uterus). All Kaleela knew about endometriosis by this time was that it could affect her ability to have children.
This whirlwind of symptoms to diagnosis took only a few months, bringing Kaleela’s story to March 2020.
Treatment but no cure
Kaleela’s excision surgery (read more about treatment possibilities in our last article) was planned for 3 months later. In the meantime, not wanting to go through this debilitating pain again, Kaleela was put on a progesterone birth control pill. It sort of stopped her period, but the relief was short-lived. Pain in her flanks and ovaries came back and ibuprofens were her daily ‘vitamins’. During a visit to the emergency room in May 2020 because of extreme right flank and pelvic pain that was different to the pain she had felt before, the doctor discovered (through a pelvic CT and ultrasound) a 7cm large simple cyst on her right ovary and an endometrioma on her left ovary. Unlike other cysts, endometriomas do not go away by themselves and so have to be removed surgically. Kaleela was in more daily pain than ever with the ovarian cysts, but her surgery could not be moved up more than a few days, so the doctors prescribed strong pain medication to help her make it to her surgery date.
One month before her surgery, Kaleela also had to stop taking birth control because her surgeon wanted her body to be in as much inflammation as possible, so that he would be able to see all of the endo for the surgery. During that last period before surgery, only a doubled dose of opioids brought her pain level on her worst day down from a 10 out of 10 to an 8 out of 10.
The surgery took 4 hours. Kaleela’s stage IV endometriosis had created so much scar tissue and adhesions that it had damaged her pelvic organs, twisted them around each other and fused them together. The surgeon had to untangle everything; remove endometriosis from all over the outside of her bladder, her posterior cul-de-sac (which was completely obliterated, with her vagina, cervix and rectum all adhered to one another), pelvic sidewall, ovaries and the outside of her uterus; cut out scar tissue and adhesions which were even sticking her bowel to her left ureter; and suspend her ovaries to prevent them from sticking back down into the healing tissue after surgery.
The next blow came when Kaleela woke up from surgery. She had hoped that excision surgery would make it easier for her to conceive a child, but the surgeon sadly revealed that he was unable to unblock her fallopian tubes, which were damaged and filled with endometriosis and scar tissue. She and her husband were devastated.
The recovery from the excision surgery was long. The complete healing after restoring normal pelvic anatomy can take up to 6-12 months. It took 4 months for her period to come back, but Kaleela was able to move again. The pain was now only on a level 2-3. Full of hope after a normal, relatively pain free first period, the second period brought back old pains up to a level 8, introduced horribly heavy bleeding and left Kaleela disheartened.
Since then, she has had another period, but she felt more prepared this time because her pelvic floor physical therapist helped her to come up with a toolkit of ideas that would help her to minimize the pain, digestive issues and bloating. Some of the things that helped her get through the pain are: an anti-inflammatory
All’s well that ends well?
When her post-surgery pain free days ended up being so short-lived, Kaleela sought out further help from her family doctor and gynecologist. A pelvic ultrasound and MRI was taken in December 2020 unfortunately revealed that there is another 8cm endometrioma growing on Kaleela’s left ovary. She and her husband named it Steve (read more about Steve). As you can imagine, Steve is not welcome and needs to go. But any upcoming surgery also begs the question: what can actually be done to both reduce Kaleela’s pain and optimise her fertility? Her greatest meaning in life has always been the dream of having kids. After the last surgery and the diagnosis of blocked fallopian tubes, this dream moved further away. The decision between fertility and pain relief is a choice no one should ever have to face, but the fact is that since the only cure for adenomyosis is a hysterectomy and since designing recurrent endometriomas seems to be the hobby of her left ovary, Kaleela’s best chance at lasting pain relief is a hysterectomy that leaves only her right ovary behind.
But since she is not ready to give up on having children, Kaleela and her husband are now saving up for their first IVF cycle, which means keeping the ovaries intact for now for egg harvesting (and living with Steve for a little longer). They have also been told that their best chance to conceive with the severe adenomyosis is through gestational surrogacy, which is thus also something they find themselves needing to consider. Any infertility treatments are extremely expensive though, which places a burden beyond the concerns about pain and fertility on the shoulders of the already overwhelmed couple.
Besides all the physical pain, Kaleela’s mental health and professional life have suffered greatly. Since her diagnosis she has not worked full time and has had to postpone her master’s thesis multiple times. Depression and shattered dreams have been followed by one trial after another. Sometimes she struggles to look at her most recent nephew (2 years old), explaining that it creates so much guilt to feel such unintended resentment towards her own family members who all have children, especially since she is the only one, even in her extended family, who has found it so close to impossible to conceive. Endometriosis has robbed her of everything she always wanted.
Sometimes Kaleela asks herself what would have been if she hadn’t been on birth control for 11 years. Would she have been diagnosed earlier and her fertility less affected? The problem with endometriosis is that it depends on estrogen. However, even with hormonal suppression therapy, endometriosis cannot be cured, as it can generate its own estrogen. The disease can thus continue to grow silently, wreaking havoc and causing irreversible damage to pelvic and even to extra-pelvic organs over time.
Sharing is caring
On her instagram page @endofinfertility, Kaleela shares her ups and downs, and she is always open to answering questions from those who want to know more about endometriosis and adenomyosis. Specific Facebook groups such as Nancy’s Nook Endometriosis Education, along with their website Nancysnookendo.com, and other resources like The Endometriosis Sumit have helped by answering questions through vetted sources. Facebook endometriosis support groups have also helped with finding companionship from others who also struggle with this disease.
Her advice to anyone on this endometriosis journey? Most of all, educate yourself! There is so much misinformation out there on the internet. Start pelvic floor physical therapy from day one, and if your doctor tells you to go on hormonal suppression or get a hysterectomy, find a second opinion from a vetted endo expert. Many of the vetted endo experts offer the initial consultation and records review for free, enabling prospective patients to ask questions and find out what their options might be. Kaleela also encourages endo sufferers to undergo expert excision surgery; it is a blessing and can reduce the pain anywhere from 50% to 100%, based on Kaleela’s experience and the experience of other women whose journey she has stumbled upon. Kaleela also says that from what she has researched and learned over the months following the reputable endo sources, no drug - especially not Lupron or Orilissa (!) - can fix endometriosis! She says that many sources indicate that these drugs have serious side effects and only target symptomatic relief, while the disease still causes its damage silently; the best way to try and prevent the damage that endometriosis causes is to get expert excision surgery to remove the endo as soon as possible so that it can be stopped from causing further damage. Furthermore, Kaleela says that any endo sufferer should be willing to travel to a specialist if one does not practise near them (it is so worth it!) and maybe even attend the Endometriosis Summits to be informed about the latest research and treatment possibilities. Another important resource is iCareBetter, a service that thoroughly vets endometriosis surgeons.
Last but not least, Kaleela’s advice is to be prepared for anything; endometriosis can rob you of more than just a pain free daily life.
If you have just received your endometriosis diagnosis or are in the midst of it, you are not alone.
Be smart. Be (c)LIT. Fly with us!🌺🐝