I was diagnosed with endometriosis in 2014 after years of symptoms. I had severe period pains since I was a child and had been given a diagnosis of primary dysmenorrhoea which basically means period pains that are not the result of an underlying medical condition.
In my late twenties, I developed a peculiar new pain that would occur just before menstruation, associated with a very small area of localized tenderness. Initially, it was thought to be muscular/ligament pain which became a reliable warning that menstruation was imminent. Eventually, I started the oral contraceptive pill and saw an improvement in my symptoms.
In 2013, I decided to stop the contraceptive pill. Not only did the symptoms become worse, but I also noticed a firm lump in that same area. The pattern of pain had also changed to experiencing a first wave of discomfort around mid-cycle and then a second wave of more severe pain occurring immediately before menstruation with tenderness.
My GP requested an XRAY because the lump felt quite firm and she wanted to exclude a bony cause. As the XRAY was normal, she advised a period of observation. Unfortunately, the pain became increasingly worse during that time. Whatever it was, it was clear that it was responding to hormonal changes.
I had an ultrasound that confirmed the presence of a soft tissue mass. On MRI, the mass was seen to be abutting the rectus abdominis muscle (abdominal wall) and provided further information about it’s appearance but couldn’t say for sure what it might be. A sarcoma (type of cancer) was suggested as a possibility but due to my reported relationship with my menstrual cycle, I was first referred urgently to see gynaecology.
The gynaecologist performed a pelvic ultrasound to look for signs of pelvic endometriosis. It was completely normal, so she said that it was impossible for me to have extra-pelvic endometriosis if I had no signs of endometriosis inside my pelvis on ultrasound.
The reasoning behind that conclusion was that extra-pelvic endometriosis would correlate with severe pelvic disease. I also had no previous history of surgery which would make it a spontaneous abdominal wall endometriosis which is very rare.
She discharged me from clinic back to my GP who then sent an urgent referral to the Sarcoma Team. They performed a biopsy which confirmed that I had right abdominal wall endometriosis.
They kindly offered to remove it but felt it was more appropriate that I was under the gynaecology team so I was referred back to gynaecology.
An operation was planned which would also allow them to perform a laparoscopy at the same time to check for pelvic endometriosis. They found some areas of superficial endometriosis inside my pelvis and also some deep endometriosis.
I had been experiencing symptoms of pelvic endometriosis for years but I will never know for sure whether or not it had impacted my fertility as we hadn’t been trying to conceive for long enough (less than a year).
My next expected period following the surgery didn’t arrive.
As it turned out, I had conceived and was happy to find out that I was expecting my first baby.
What is endometriosis?
Endometriosis is when tissue that is similar to the lining of the uterus (the endometrium) grows in places outside of the uterus. This tissue responds to hormonal changes in the same way that the endometrium of the uterus does, so it builds up and breaks down each month in response to hormonal changes. This results in inflammation and scarring in these areas.
What causes endometriosis?
The cause of endometriosis is unknown, but there are several theories, including:
- Retrograde menstruation – Flow backs up through the Fallopian tubes into the abdomen resulting in tissue attaching and growing in those places
- Blood or lymphatic spread – in a similar way to how cancer cells are able to spread
- Transformation – other cells may actually transform into endometrial cells
- Direct implantation (iatrogenic) e.g. developing endometriosis in the abdominal wall following a c-section
There appears to be an increased risk of endometriosis if other family members also have it.
A systematic review by Caporossi et al² looked at the potential roles of occupational and environmental risk factors. They concluded that the data seemed to support a link between endometriosis and organochlorine exposure (e.g. organochlorine pesticides which are now banned in a lot of countries) and that night work (especially a 5 year history of rotating night shift patterns) may play a role in developing the disease. Night shift work has been linked to interference on hormonal balance. They noted study design flaws, concluding that further studies would be needed to better understand and confirm the potential influences.
Symptoms of endometriosis
Symptoms vary depending on the site of disease and the severity of disease does not always correlate with the severity of symptoms. Mild disease doesn’t necessarily mean mild symptoms. Symptoms include:
- Chronic pelvic pain (usually defined as 6 months or longer)
- Period-related pain (dysmenorrhoea)
- Deep pain during or after intercourse
- Period-related or cyclical bowel symptoms, e.g. blood in stool
- Period-related or cyclical urine symptoms, e.g. blood in urine
Although thought to be rare, endometriosis has been found in distant sites including the lung, heart, diaphragm, liver, gallbladder, umbilicus, pancreas, spleen, breast, extremities, brain, vertebrae, peripheral nerves, and nose!
I read an interesting study³ which demonstrated that endometriosis-derived cells were able to spread from their primary location to other parts of the body, but would be too small to be able to be detected by conventional methods.
They proposed that distant-site endometriosis may be more common that we think and might also explain why some women with endometriosis suffer from systemic complaints affecting different body areas that are currently unexplained.
- Imaging (e.g. ultrasound, MRI), although normal imaging does not exclude the presence of endometriosis.
- Diagnostic laparoscopy which is a surgical procedure but also allows to potentially treat any areas of endometriosis that are found. Endometriosis may be identified by it’s appearance during the procedure and when samples are sent away for further inspection under a microscope.
- Extra-pelvic endometriosis may need involvement of other specialty teams to aid diagnose depending on location.
- Painkillers to control pain associated with endometriosis
- Hormonal therapy to , e.g. the oral contraceptive pill, intra-uterine system, contraceptive patch, GnRH analogues
- Surgical management – e.g. removing areas of endometriosis, hysterectomy (removing the womb)
My current situation
I spent the last 5 years or so mostly either pregnant or breastfeeding due to the small age gaps between each baby. When I was breastfeeding, I had lactational amenorhoea which means I enjoyed the benefit of not having any periods during that time.
At my follow-up appointment following surgery, the doctor had jokingly told me not to have any c-sections, given the fact I had managed to fine myself with spontaneous extra-pelvic endometriosis. As it turned out, I ended up with 3. Such is life.
When my periods returned earlier this year, I started to experience pains again in several locations. Some of these areas are non-pelvic regions but were showing the exact same pattern of pain as my previous endometriosis.
I recently had further imaging to look for signs of endometriosis. The consultant said that the imaging excluded significant endometriosis and the next steps would be hormonal therapy and observe, or to explore surgically which has it’s own risks. He said that it could just be pain related to hormonal changes that were unrelated to endometriosis, or it could be that there is endometriosis but it was not detected on imaging.
I am currently on hormonal therapy for a year to assess the response. Perhaps these pains will resolve, or perhaps like my earlier experience, years will pass and eventually it will be found to have been endometriosis all along.
Only time will tell.
I’d love to hear your thoughts and if you found this post useful, please share!
1) Andres MP, Arcoverde FVL, Souza CCC, Fernandes LFC, Abrão MS, Kho RM. Extrapelvic Endometriosis: A Systematic Review. J Minim Invasive Gynecol. 2020 Feb;27(2):373-389. doi: 10.1016/j.jmig.2019.10.004. Epub 2019 Oct 13. PMID: 31618674 [Pubmed] Accessed: 01/03/2021
2) Caporossi L, Capanna S, Viganò P, Alteri A, Papaleo B. From Environmental to Possible Occupational Exposure to Risk Factors: What Role Do They Play in the Etiology of Endometriosis? Int J Environ Res Public Health. 2021 Jan 11;18(2):532. doi: 10.3390/ijerph18020532. PMID: 33440623; PMCID: PMC7826798. [Pubmed] [PMC Free Article] Accessed 01/03/2021
3) Gamble KL, Resuehr D, Johnson CH. Shift work and circadian dysregulation of reproduction. Front Endocrinol (Lausanne). 2013 Aug 7;4:92. doi: 10.3389/fendo.2013.00092. PMID: 23966978; PMCID: PMC3736045. [Pubmed] [PMC Free Article] Accessed 01/03/2021
3) Samani EN, Mamillapalli R, Li F, Mutlu L, Hufnagel D, Krikun G, Taylor HS. Micrometastasis of endometriosis to distant organs in a murine model. Oncotarget. 2017 Apr 6;10(23):2282-2291. doi: 10.18632/oncotarget.16889. PMID: 31040919; PMCID: PMC6481344. [Pubmed] [PMC Free Article] Accessed: 01/03/2021
Amal is a paediatrician and mum/step-mum to four wonderful children. She started MedicMum101 to share tips and experiences on all things motherhood. She enjoys writing about parenting, health, and wellness, as well as other life musings from time to time. When she is not working, writing, or running after the kids, you can often find her working on a new piece of art.