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

Updated: Jan 25




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

  • Pain during or after sex

  • Pain when going to the toilet (passing urine or going for a poo)

  • Fatigue

  • Infertility

  • Vaginal bleeding in between periods

  • Lower back pain

  • Prolonged periods

  • Constipation

The number and severity of symptoms varies with each sufferer. Some women with endometriosis do not have any symptoms but it is diagnosed coincidently during surgery performed for other reasons. Some women are not diagnosed with endometriosis until they present with infertility and it's likely that many women do not receive a diagnosis at all.


If you are having heavy or painful periods or any of the symptoms above please inform your GP and ask for a referral to the gynaecologist for an assessment.




The diagnosis of endometriosis requires a laparoscopy to visualise the lesions and/or laboratory confirmation from a sample of endometriotic tissue (which could be taken from other parts of the body where it is located).


The laparoscopy is best done by a gynaecologist who has training and skills in laparoscopic surgery for endometriosis.


Endometriosis can be staged or classified during surgery by the gynaecologist. However the symptoms that a woman experiences do not necessarily correlate with the stage of endometriosis. Therefore a woman with mild or minimal endometriosis can have debilitating symptoms.


Currently the average time it takes for a woman to get a confirmed diagnosis is 8 years. This is because many women do not get referred early enough and there can also be delays in getting fully assessed. So please tell your family members, friends and daughters who have these symptoms to seek medical advice early on and aim to get a diagnosis.




Getting an earlier diagnosis can help you:

  • Get symptom relief at an earlier stage.


  • Help put plans in place to optimise your general health which may help your symptoms.


  • Allow you to make a brief plan for when you are ready to start trying for a family. I recommend that you do this even if you haven’t found the right partner or aren’t planning to start your family for a long time. You may also want to consider doing this if you don't plan to have children at all.

*Fertility planning and fertility preservation will be discussed in a future blog*

Can endometriosis cause infertility? Facts about endometriosis and fertility

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

  • Infertility affects around 30-40% of women with endometriosis. In women with endometriosis classified as moderate to severe, thick scar tissue affects the function of the reproductive tract. This is known to cause infertility.


  • Not all women with endometriosis will have such scar tissue. In many cases it is not clear why women with minimal to mild endometriosis have difficulty becoming pregnant.

*84% of women trying to conceive without endometriosis will be pregnant

within 1 year .

*75% of women trying to conceive with minimal-mild endometriosis will be

pregnant within 1 year

*50% of women trying to conceive with moderate endometriosis will be

pregnant within 1 year

*25% of women trying to conceive with severe endometriosis will be pregnant

within 1 year

  • 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 doesn’t support that hormonal drugs e.g. Lupron, improve endometriosis related infertility.

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

Theories for why minimal or mild endometriosis causes infertility:

There are a number of theories used to explain why minimal or mild endometriosis can affect fertility which includes:


*Toxins in the fluid found in the peritoneal cavity. (The peritoneal cavity is the gap between the lining of the abdominal wall and the lining of the organs in the abdomen. The fluid lubricates these linings.)


*Problems with egg travelling down the Fallopian tube.


*An abnormal immune response against the body.


*Failure of the follicle to release its egg.

Endometriosis can lower ovarian reserve (number of follicles that are capable of developing into eggs that could be fertilised to produce a pregnancy).


Most of the treatments for endometriosis focus on symptom control rather than treating the root cause, preventing disease progression and subsequent damage to organs.



If you have endometriosis, follow the tips below to put yourself in the best position possible to protect your fertility

1. Get an official diagnosis from an endometriosis specialist

Being diagnosed BEFORE you start trying to conceive can minimise delays in receiving treatment if you have problems trying to conceive in the future.


This means going to see your GP and being referred to a gynaecologist. Your GP will arrange an ultrasound scan first. If this doesn't show any abnormality you should be referred to a gynaecologist.


Before you see your GP, note your symptoms/photos in a diary, app or chart over a period of 1-3 months and then discuss with your GP. Describe how your symptoms are impacting your daily life, your work, your sex life, your social life. This is a pain and symptom diary by endometriosis UK that you can use.


If your symptoms are not taken seriously, are dismissed or you are told that you do not need further investigation, see a different GP or take a friend or advocate with you to help push for the referral.


2. Well before you start trying to conceive: Have a discussion with your endometriosis specialist. 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. Consider this tip even if you do not have a current partner or are unsure if you want to have children in the future.

If you are diagnosed with endometriosis don’t forget to ask your gynaecologist on what to do when you are ready to start your family. Your gynaecologist may recommend an early referral to see them for surgery before you start trying to conceive or may advise you to start trying for a period of time before seeing them.

Once you have received a diagnosis of endometriosis you can take early action IF you have problems trying to conceive.


Endometriosis can lower ovarian reserve. If you plan to delay trying to start having a family, you may want to consider the option of egg or embryo freezing to store some eggs in case you have difficulty conceiving in the future. A joint discussion with a fertility specialist and your endometriosis specialist can help you make this decision.

3. Look after your mind and body

Maintain a healthy lifestyle from as early as you can; not just before trying to conceive and at least 6-12 months beforehand. Eat a nutritious diet and be active.

Optimise your pelvic health as early as you can.


  • Ensure your smear tests are up to date.


  • Have protected sex with a condom and ensure you have regular tests for sexual transmitted infections.


  • Have an STI check at least one a year if you are having sex with a regular partner and not using a condom.

For many women, endometriosis has a significant effect on their life physically, sexually, psychologically and socially. Infertility causes additional stress. Looking after your mental health is essential.

Your GP can refer you for an Expert Patient Programme which is a 6-week programme to help develop self-management skills. Practice self-care regularly.


If you are feeling persistently sad, low or anxious please see your GP or self-refer to services like NHS psychological therapies services (IAPT).

4. Early Preconception Preparation

At least 6 months before you are ready to start trying to conceive see your GP, pharmacist or practice nurse for preconception advice. Make arrangements to see your specialist gynaecologist if you have been advised to do so at this stage.

Take folic acid and vitamin D.

5. Once you’ve 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.

If you have not become pregnant after 6 months see your GP together with your partner. Your GP can arrange the basic fertility investigations including sperm analysis but at that stage you should be referred back to the specialist gynaecologist for review of your endometriosis if you haven’t been referred already.


Your management should involve a multi-disciplinary team with input from a fertility specialist.

In women with endometriomas or scar tissue/adhesions in the pelvis, having laparoscopic surgery to remove the cysts by cystectomy with excision of the cyst wall or remove the scar tissue by excision or ablation, can improve the chance of spontaneous pregnancy.

Any surgery should be done by a gynaecologist with specialist surgical expertise in endometriosis to reduce risk of damage to the ovaries. Damage to the ovaries can reduce the amount of functioning ovarian tissue and further reduce ovarian reserve.

An AMH test to measure Ovarian Reserve taken before any surgery will help you and the specialists decide on whether the benefits of surgery outweigh the risks.

If the AMH is low, you could be advised to freeze some eggs or embryos well before you have your surgery. You may be advised to avoid surgery altogether.

If you require fertility treatment or surgery, ensure your endometriosis specialist and fertility specialist have discussed your case together.


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Information sources used in this article:

Endometriosis diagnosis and management: NICE guidance

Endometriosis, Fertility and Pregnancy webpage, Endometriosis UK


Endometriosis, Fertility and Pregnancy PDF, Endometriosis UK

Infographics by Sarah Digby

Other information sources you may find useful:

A list of accredited endometriosis centres in the UK

Endometriosis.org


All Party Parliamentary Group on Endometriosis Inquiry Report 2020



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