Living with Endometriosis and Infertility: The lessons I’ve learned

Updated: May 13




Endometriosis is a painful, chronic systemic inflammatory condition that affects 1 in 10 women of reproductive age. Endometriosis can have a significant impact on the physical, mental and social well being of women who suffer with the condition. Additionally 30-40% of women who have endometriosis will experience difficulty in becoming pregnant.


Read on to find out how you can protect your fertility if you suspect you have endometriosis or if you know someone who has symptoms that could be related to endometriosis.



Endometriosis, Fertility and Infertility: Blog at a a glance

  • If you have any of the common symptoms shown in the infographics below, see your GP for referral to a gynaecologist.


  • Getting an early diagnosis of endometriosis may help you be in a position to protect your fertility in the future.

  • 60-70% of women with endometriosis do not experience difficulty becoming pregnant.


  • Infertility affects around 30-40% of women with endometriosis.

  • Some women with endometriosis will have scar tissue that affects the ability of the reproductive system to work properly. However, many women with endometriosis will not have this scar tissue and it is not clear why women with endometriosis have difficulty becoming pregnant.

  • Laparoscopic surgical treatment for endometriosis that removes endometrial tissue and scarring may improve infertility related to endometriosis.

  • There is no evidence that endometriosis causes women to have repeated miscarriages.

  • There is no evidence that treating endometriosis results in women having fewer miscarriages.

  • Research does not support that hormonal drugs e.g. Lupron, improve endometriosis related infertility although they can improve symptoms. The risks and benefits of taking the drugs must be considered.


  • Research doesn’t support that dietary changes improve endometriosis related infertility.

  • The six tips for protecting your fertility:

1. Get a confirmed diagnosis from an endometriosis specialist as early as

possible.


2. Do not hesitate to see your GP to get the ball rolling. Encourage your friends,

family or daughters who have symptoms to seek medical advice.


3. Have a discussion with your endometriosis specialist well soon after diagnosis

and well before you start trying to conceive. Do this even if you do not have a

current partner or are unsure if you want to have children in the future.


4. Be aware of the complications of endometriosis and how they can affect

future fertility. You may consider fertility preservation methods such as egg

or embryo freezing.


5. Look after your mind and body.


6. Early preconception preparation.


7. One you have started trying to conceive, seek medical advice early on if you

do not become pregnant. Your endometriosis specialist and fertility specialist

should discuss your case together as part of a multi-disciplinary team.




My endometriosis story (well part of it!)

I was 10 years old when I first went to see a gynaecologist. I had severe period pains and always missed school during the first 1-2 days of my period. I was told I probably had endometriosis and the doctor recommended that I started the Pill.


I wasn’t keen on starting the pill at that time but within a couple of years of living with pain, I started the pill. I continued to have bad period pains throughout my teenage and adult life until I used contraceptive methods that stopped me menstruating temporarily i.e. the Depo-provera (which I didn’t tolerate very well) and then the Mirena Intrauterine system (IUS).

My diagnosis of endometriosis was officially confirmed when I was 32 years old. At the time I was using the IUS and was not having periods. However, I didn’t realise that the IUS was becoming less effective at controlling my endometriosis symptoms over time.


I developed a painful lump in my belly button; the pain was so strong that I couldn’t walk properly. I went to see a general surgeon and was booked for an umbilical hernia repair. During the operation the surgeon said that there was only a tiny hernia but she had found lumps of blood in the lining of my belly button which she had sent to the laboratory for analysis.

The results reported endometriosis. I was surprised that endometriosis was in this location but wasn’t surprised to be told that I had endometriosis.

I subsequently saw a gynaecologist specialising in endometriosis who said I should start the combined oral contraceptive pill in addition to my IUS. At that time, I hadn’t even considered asking about my future fertility and the potential effect of endometriosis on my ability to have children.

So, I was using the Mirena IUS and taking the combined oral contraceptive pill. I did this for around 6 months before stopping altogether as we decided to start trying for a baby.

Within 6 months, I had severe pelvic pain and required an emergency laparoscopy during which I had an emergency ovarian cystectomy for a ruptured bleeding cyst. I had a lot of blood in my pelvis and endometriotic lesions were seen in my pelvis. The operation damaged my right ovary and reduced my ovarian reserve although I did not know that at the time. I did not know that surgery to remove an ovarian cyst could reduce my chances of future success with IVF but had never even thought about my future fertility or encountering problems with it.

Actually my cyst was full of blood (a haemorrhagic cyst) and was not related to endometriosis. I needed emergency surgery so there was little we could really do to plan or avoid ovarian surgery. However, endometriosis itself reduces ovarian reserve so being aware that ovarian surgery could also reduce this further might have prompted me to take different action at an earlier stage e.g. consider egg freezing. It's all hindsight and I don't really know what I would have done had I known.

The lessons I've learned about endometriosis

If I could go back to the time, when I saw the specialist gynaecologist, I would make sure I had discussed how endometriosis (or any known gynaecological condition) could affect my fertility and have a brief plan of action for if I experienced difficulty becoming pregnant which would include knowing my Anti-Müllerian hormone level (AMH) , which can be reduced by endometriosis, and discussing fertility preservation methods such as egg freezing.

The majority of women with endometriosis will not have a problem getting pregnant or having a baby. However infertility is common in women with endometriosis.


Having lived with infertility for a decade, I’d encourage all women who have a medical condition that could affect fertility e.g. fibroids, polycystic ovary syndrome, thyroid disease, endometriosis to have a discussion with their specialist or GP about potential complications of their condition and whether those complications could affect the ability to become pregnant in the future and to discuss potential options.


You may not be able to plan for all unexpected events but if you have a discussion about common complications that are relevant to your gynaecological condition you can be in a position to consider whether using a fertility preservation method might be right for you.

About Endometriosis

Endometriosis is a painful, chronic systemic inflammatory condition where tissue similar to the lining of the uterus system (this tissue should only be located inside the uterus) is found elsewhere in the body.

This endometrial tissue can be found on the ovaries, Fallopian tubes, on the side of the pelvic walls and on ligaments that keep the uterus in place as well as on the bladder, bowel and in surgical scars e.g. C-section scars, laparoscopy scars. Rarely tissue can be found in the lung, brain, vagina.

When a woman bleeds during a period, the lining of the uterus sheds. The blood leaves the uterus through the cervix and vagina. But in a woman with endometriosis, the other areas where endometrial tissue is located also bleed but the blood cannot pass out of the body. The blood causes irritation, inflammation, pain and scarring.


Endometriosis can also lead to the formation of endometriosis-related cysts known as endometriomas (also called chocolate cysts). These cysts may not cause any symptoms but can become large and painful. They can be found in the ovaries and other parts of the body.


Endometriosis affects approximately 10% of women of reproductive age.


Common symptoms of endometriosis include:

  • Painful periods. The period pain can be severe and debilitating.

  • Pelvic cramps (in between periods)

  • Heavy periods