Endometriosis & Pregnancy - from one who knows

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Thoughts & musings on midwifery related topics for the March Education Newsletter. 

My name is Genevieve, and I am 29 years old. I have a black cat called Mabel. I have a beautiful partner and a very big family.

I have dark, irritatingly and exceptionally fast growing dark hair on very pale skin.

I have an obsession with painting my nails an array of rainbow colours.

I have a love of fine wine and expensive cheese.

I also have Endometriosis. 

It’s likely that I have had this chronic illness since the start of puberty, but if you ask most of the 50 odd doctors I’ve had the (unfortunate) pleasure of seeing in the past decade, they would disagree. Endo is so difficult to diagnose and most doctors brush off what I’m feeling as ‘normal period pain’, ‘hormonal fluctuations/time of the month’ or just being ‘under the weather’. 

Endometriosis (Endo as its commonly known) affects 1 in 10 women, and it can be a debilitating, soul crushing and challenging journey that for most sufferers doesn’t have an end date in sight.

Endo occurs when the lining of your uterus begins to migrate, and grow on other parts of the body such as the intestines, bowel and stomach. These adhesions can cause severe pain and have many complications.

My personal varying symptoms include extreme pelvic pain, severe back pain between my hips (which gets far worse if I eat any gluten or stay seated for long periods of time). I get shooting pain down my legs, experience hot flushes, night sweats, anxiety and extreme fatigue. Add on to this more than occasional bouts of IBS, sore breasts, headaches, irregular bleeding and emotional fluctuations that I can never keep up with. 

I have suffered with these symptoms for over 15 years and not just when I have my period (if only it were that simple!). 

I have had two laparoscopies, my first when I was 20 and the Gyno ‘found nothing’. Fast forward 7 years to my second surgery, where not only was there Endo, it was so severe that my surgery was extended from the expected 30 minutes to almost two hours.  During the surgery they burnt off lesions throughout the left side of my outer uterus lining, and cut out adhesions on the right side which had fused my bowel to my abdominal wall. I still remember seeing the doctor’s face. I wish I was a mind reader. I could have sworn he was surprised and almost felt ashamed that he had initially said to me: “there’s probably nothing wrong with you if nothing was found in your first laparoscopy”. Oh how wrong he was, and this was said to me by an Endometriosis specialist. 

In the almost two years since this surgery took place, my back pain, digestion troubles and fatigue have only increased.

The one upside is I finally found a new and fantastic Gyno who has treated me and my Endo from every imaginable angle. I am now in a position where I am managing my pain with a combination of nerve-blocking medication, pain relieving suppositories (fun!), and being put on the FODMAP diet which eventually led to me finding out a huge trigger for my poor operated-on-bowel, was gluten. 

I manage my Endo ups and downs daily, however lately I have started to think long term and into my future. The Endometriosis Institute has outlined that “there is no question that chances for pregnancy in endometriosis are significantly decreased. Women with Stage I or II endometriosis have an approximately 2% chance for conceiving in any given menstrual cycle (cycle fecundity rate). That chance is less than 1% for women with Stage III or IV disease.” 

As my Endo has reached my bowel and there were adhesions that had to be removed - this makes me a stage IV. 

According to the Endometriosis Care Centre of Australia, “Stage 4 Endometriosis is said to exist when there are extensive implants and severe adhesive disease. Adjacent organs are usually involved such as the bladder and bowel”. 

So getting pregnant for me, is likely to be extremely difficult. 

I currently use a Mirena IUD as my contraceptive, and whilst this certainly reduces the pain associated with my cycle, it unfortunately (for me) does not eliminate the periods all together. When the time comes for me to remove this, not only will the pain return, but as advised by my Gyno, I will only have a 3 month window before reinserting the IUD back in to give my body a break. Most women would have a much longer window of trying before they seek help in the form of IVF or hormone boosters etc, but not me. This could go on for years, and I’m already nervous about the toll it will likely take on my physical and mental health. 

As a person who suffers from Anxiety this is not something that I am looking forward to going through. A really important thing to consider is that many women who have Endo will suffer from Anxiety and/or Depression as its part and parcel of having a chronic illness.

According to Jean Hailes, “About 30% of women with endometriosis have trouble getting pregnant. It is thought that the reasons are related to:

  • scarring of the tubes and ovaries from endometriosis
  • problems with the quality of the egg
  • problems with the embryo travelling down the tube and implanting in the wall of the uterus due to damage from endometriosis
  • change of the organs in the pelvis such as adhesions with scarred pelvic tissue and blockage of the fallopian tubes”

So with all of these difficulties around getting pregnant and staying pregnant I need to remain as mentally and physically healthy for myself and for my baby. 

If and when I do conceive whether naturally or with assistance, I hope to find myself a midwife. Most importantly, I want to have support. 

I want a midwife or team who knows what I have been through to get there. Someone who can really understand my fears, emotions, stressors and complications. I have had so many disappointing encounters with doctors who have made me feel as if I am crying wolf, that when this monumental miracle happens, I want to be understood and my questions to not be shrugged off as me ‘overreacting’. 

I have spent a lot of my life feeling like my body has failed me. The one part of my body that truly makes me a woman, feels broken. Defected. Worthless. This illness has caused unsurmountable pain and fear in me. 

If I am lucky enough to be sitting in front of a midwife and I have what may seem like a million ‘silly’ questions, I don’t want a pat on the knee and a smile telling me “everything will be fine, don’t you worry”. I want someone who takes me seriously and is invested in finding out the answers to million questions if I have them. 

There is no cure for Endometriosis and it is likely that it will still be present after a pregnancy. I am only one spokesperson for women with Endo, but I feel like I am not alone in saying most of the time, we just want to be understood and accepted, and our pain and suffering to be acknowledged appropriately. 

This month is Endometriosis Awareness Month, and I will be wearing yellow every day to show my support and involvement. 

1 in 10 women have Endo - think about how many women you know. How many mothers you have worked with. Chances are more than a few of them have been suffering in silence for a long time. 

I honestly believe that if we want things to change, for young girls to get diagnosed and cared for earlier, then it’s the responsibility of everyone, to recognise what Endo is, and what toll it takes on women all over the world. 


Where to now?

  • There are so many resources and links with information online, but the other thing that can be really informative, is to ask us, the women with Endo the questions. We live with it every day, and when someone shows interest or concern, that’s one more person who is on their way to understanding and accepting and helping us see some change. 
  • Think about how will you show support for women with Endo this month or in the years ahead. What will you do differently? 
  • You can read my blog Finding Fortitude here (read and share so we can get the message about Endo out to everyone).
  • You can get more information about Endo from Endometriosis Australia here
  • or access Jean Hailes online resources about Endo here
  • Check out this free online podcast series by Melissa Ambrosini - she has lots of topics