Jessamy is among the estimated 200 million women worldwide suffering from endometriosis, a menstruation disease in which tissue similar to the lining on the inside of your uterus grows outside of your uterus. Although difficult to diagnose, endometriosis is present in at least 25-40% of women struggling to conceive.
For Jessamy, her diagnosis took 18 long years. She spent 4.5 years trying to conceive, saw countless doctors, and experienced 6 miscarriages, 8 rounds of ovulation induction, and a round of IVF (resulting in miscarriage) before finally getting her diagnosis. Then, after grueling endometriosis surgery and an immune-suppressing protocol, Jessamy was overjoyed to become pregnant. She is now excitedly preparing to welcome her rainbow baby girl.
There are many stories like Jessamy’s across the globe. That’s why we at OvuSense and viO HealthTech honor Endometriosis Awareness every year as a way to raise awareness for this extremely painful condition. This year, Jessamy is sharing her courageous story with us through a series of questions and answers, in hopes of encouraging and supporting others who may be struggling.
OvuSense: What were your first symptoms of endometriosis?
Jessamy: My first symptoms of endometriosis started when I was really very young. I started my period just before I turned 13 and as time went on, it became more and more clear that what I was experiencing wasn’t normal. My periods were very heavy and painful, to the point that I’d soak through pads and my clothes multiple times a day and faint from the pain. I had to miss quite a few days of school and it became not only an embarrassing issue for a young teenager to deal with but also incredibly hard physically and mentally.
As time went on, I frequently tested as anemic (from the amount of blood loss presumably) and then other symptoms started to appear. A big one for me was bladder pain and urgency. This was something I experienced for many, many years and was perhaps the worst of them all. By the time I had my endometriosis surgery at age 31, my bladder had a 4cm internal endometriosis nodule that was bleeding out.
But back to the early days… bloating, generalized pelvic pain, gut issues, and thyroid issues were also appearing. My body was really not in a very good place at all, but no doctor ever suggested endometriosis, sadly. As I got older other symptoms joined the mix – I started having recurrent miscarriages when my husband and I tried to start a family. I ended up having six losses before my diagnosis. Then, eventually, I just stopped being able to get pregnant altogether. I’d later learn that endometriosis had completely obliterated much of my pelvis and getting (let alone staying) pregnant was an impossibility at that point.
OvuSense: What was the process like to get an endometriosis diagnosis?
Jessamy: Extremely long, difficult, mentally testing, and in the end, expensive. When I was in and out of the doctor as a teenager and young adult, the only solution suggested to me was going on the pill. I ended up going on the pill for around 14 years and it did help with some of my symptoms e.g. heavy bleeding, but other symptoms remained e.g. pain in my bladder and bloating. During that time, I never received an answer for ‘why’ this was all happening. In fact, most doctors told me what I was experiencing was a ‘normal’ part of being a woman!
When the miscarriages kept occurring (all in the first trimester) it was an extremely heartbreaking time for my husband and me. This went on for about 4.5 years, all while our friends and family members were having babies left, right, and center. Emotionally, it was very testing. We tried 8 rounds of ovulation induction (no pregnancies occurred) and a round of IVF (we miscarried again) and we had really started to accept that having a baby was never going to happen for us.
Then, at a routine scan with one of my fertility doctors, the ultrasound screen showed a big black mass in my pelvis which hadn’t been there before. I was referred for an urgent private MRI to see what was going on.
The MRI showed stage 4, severe deep infiltrating endometriosis and my surgery a few months later found it had spread to my ovaries, bladder, bowel, cervix, vagina, peritoneum, rectum, ligaments, and pelvic wall. I had multiple adhesions, cysts, a fibroid, and my left tube and ovary were completely encased in a 7x3cm blood-filled cyst (the big black hole seen on ultrasound). Most of my pelvic organs were stuck together and my uterus was also affected by focal adenomyosis.
After 18 years, I finally had some answers. I was shocked by the severity of the findings, but also not shocked. I knew something was seriously wrong, but I just couldn’t believe that so many medical professionals had dismissed my symptoms for so long. I initially asked about having surgery on the NHS and was told the wait could be over a year, despite the fact that one of my ureters was close to being shut off due to the endometriosis – which means I could have gone into kidney failure. We ended up going private and I had surgery in the next few months. The recovery was difficult and long, but I am so glad I did it. I know that endometriosis is a lifelong condition and that I may need further surgeries in the future. I just wish our healthcare system prioritized those dealing with this condition.
OvuSense: Did you feel supported in your journey and were there helpful resources available to you?
Jessamy: Medically, no. Privately, yes. There is a serious lack of awareness and knowledge on endometriosis in the medical community and society at large, despite the fact that 1 in 10 women are affected by this crippling disease. After I received my diagnosis and shared it with those around me, many people had never even heard of the condition (particularly amongst men). It isn’t their fault, we just need to be talking about these things more and not pushing things under the carpet.
I think the notion that ‘periods are painful’ doesn’t help either. I remember once going to urgent care in Bristol in absolute agony only to be told by a female doctor that I might have a rumbling appendix or that periods just get more painful as you get older. But essentially there was nothing they could do and they didn’t have any answers. This scenario became pretty routine for me and it was beyond demoralizing. Even I started to question myself.
But pelvic pain is NOT normal. With everything I experienced over the almost two decades before my diagnosis and surgery, not one doctor ever suggested endometriosis. Not one. What’s more, up to 50% of women dealing with infertility have endometriosis and 70% of young girls with pelvic pain will go on to be diagnosed with the condition. It has to be taken more seriously.
I did find a lot of comfort from my husband, certain close friends, and my family, who were able to support me from an emotional point of view. There is also a fantastic endometriosis support community on Instagram – I connected with many ladies on there. If you search the hashtag #endometriosis or #endowarrior you’ll be able to connect with lots of other women going through the same experiences.
I’d really like to see more education on endometriosis for primary care physicians/general practitioners, emergency care staff, school nurses, fertility doctors, and employers in general. I can’t tell you how many times my pain was minimized and questioned.
OvuSense: Could you share a bit about your journey to pregnancy?
Jessamy: I came off the contraceptive pill around 5 years ago and we began trying for a baby right away. I got pregnant quickly but kept miscarrying between 5-11 weeks. This roller-coaster went on for years. We finally started seeking fertility treatment but that ended up failing or resulting in more losses. We were well and truly in a dark place and I had started to lose faith in my body.
Once I received my endometriosis diagnosis I ended up going on a medication called Prostap which essentially switches off your sex hormones. I did this for 5 months to calm everything down while I prepared for and recovered from my surgery. I ended up needing a catheter and ureteric stents for many weeks post-op, so the recovery really was no walk in the park. The last thing I needed was to be having periods during this time, so it was a big relief.
Then a few months later we decided to transfer another frozen embryo from the IVF we had done the year before. I was under the care of quite a few doctors who were all working in tandem to help support the transfer – my endometriosis surgeon, a gynecologist, my IVF doctor, and a reproductive immunologist. I was also seeing an acupuncturist on a regular basis. My medication protocol was pretty intense but coupled with the surgery, we were keeping everything crossed that this time things might be different.
And it was! I’m currently writing this at almost 38 weeks pregnant with a very wriggly little baby girl in my tummy. It still feels incredibly surreal and I wish we hadn’t had to go through everything we did to get here. But at the same time, if we hadn’t, then it wouldn’t be this particular baby growing in my tummy right now.
Even though this journey has been the hardest thing I’ve ever gone through, in many ways I know I am one of the ‘lucky’ ones. I eventually got my endometriosis diagnosis, was able to find a fantastic surgeon (Dr. Peter Barton Smith), and get/stay pregnant. I know not every story has this kind of ending and I just wish it didn’t have to be this way. We still have such a long way to go when it comes to taking endometriosis seriously, not just in terms of the fertility implications, but the wider impact it has on mental/physical health and overall well-being.
OvuSense: How was OvuSense helpful in your journey?
Jessamy: When we were trying naturally, I used both OvuCore and then OvuFirst to confirm if/when I was ovulating and it was invaluable. I’ve recommended it to so many friends since. In fact, a very good friend of mine got pregnant from using it a few months ago. She had been dealing with secondary infertility and got pregnant the first month with OvuCore. It really is the best ovulation monitor on the market in my view. During my first embryo transfer back in 2021, I used my OvuCore to monitor my core body temperature during the two-week wait as well, to ensure my body was absorbing the progesterone.
OvuSense: What do you want to share with others who are or think they may be suffering from endometriosis?
Jessamy: Mainly that you’re not alone. Endometriosis (whether diagnosed or suspected) can be a very isolating thing to live with. Juggling chronic pain, heavy bleeding, and fertility issues – all while trying to lead a ‘normal’ life are quite possibly the worst combination of lifestyle factors I can think of. Also, please don’t think any of this is your fault. You did nothing to cause this.
It’s important to realize as well that many doctors simply are not aware of the ins and outs of endometriosis. Do your research and never let them fob you off. Try to find a specialist and if you’re not happy with them, look for another (and another) until you find someone who is going to really investigate your symptoms.
If any of my story resonates with you, please do look into a pelvic MRI or consider an investigative laparoscopy (as only deep infiltrating endometriosis may be picked up on MRI). Equally, if you’re not experiencing any textbook endometriosis symptoms, it’s important to note that endometriosis can be ‘silent’ – in that it may be present but not causing any symptoms.
I constantly looked for stories of hope while we were trying to conceive and to be honest I never in a million years thought this would work for us. When I got my diagnosis, I thought that even if I had my surgery, my body would never be able to hold a pregnancy after everything it had been through. But it turns out, it was able to, once it was given the attention and care it so needed.
Keep advocating for yourself, and try to keep the hope alive. You’ve got this!
For more information on endometriosis, visit the Endometriosis Association or contact your doctor.