Endometriosis: Michelle's story

Michelle Middleton from Silsden, West Yorkshire, became unwell after the birth of her son when she was 28. She was diagnosed with endometriosis at 29.

Endometriosis UK helpline: 0808 808 2227

"After I had my son Leo, I didn't go back on the pill. I'd been taking it since I was 14 and, looking back, I think it masked my endometriosis symptoms", says Michelle.

Symptoms of endometriosis

In endometriosis, cells of the womb lining appear elsewhere in the body, for example around the bowel. They bleed in response to the menstrual cycle, causing pain, swelling and scar tissue (adhesions). Symptoms vary, and some women don't notice any at all, but for others it's unbearable.

Says Michelle: "My periods had always been painful but not intolerable. Although I had irregular bleeding when I was 18 or 19, nobody mentioned endometriosis. They changed my contraceptive pill to see if that would help, and the results of a cervical smear test showed irregularities. This led to a colposcopy (a procedure that examines the cells in the womb), and pre-cancerous cells were removed.

"I'd also had trouble with my bowels – bloating, diarrhoea and sometimes bleeding. I know now that these can be symptoms of endometriosis."

Read more about endometriosis symptoms.

Endometriosis can cause pain during sex

"At 25 I came off the pill to start my family. I got pregnant quickly, but miscarried. My second and third pregnancies happened soon after, and although Alana and Leo were premature, they're both fine.

"After having Leo, my periods were heavier and I gradually started becoming unwell. The main symptom was fatigue. Pushing the baby buggy up a hill was exhausting.

"Then, last summer, I had severe pain during intercourse. Endometriosis adhesions are fibrous, like a web, and can join organs together. Apparently my ovary is attached to my bowel, and this could be causing the pain. I also had a bad bout of bleeding after sex. I bled for about a week."

Unusual bleeding is a sign of endometriosis

"The first GP I saw told me to wait and see what happened, but I didn't want to do that, so I saw another doctor. He gave me medication to stop the bleeding, sent me for an ultrasound scan and referred me to a gynaecological consultant. The scan showed a small cyst on one of my ovaries, but they said this was nothing to worry about.

"At my consultant appointment, I was referred for a laparoscopy (a surgical procedure in which the abdomen is examined with a tiny camera). It's the only way to diagnose endometriosis definitely. When I went back for my follow-up, the consultant said, ‘Well, you’ve got endometriosis'," recalls Michelle.

Endometriosis treatments

"I’d never heard of it. He didn’t really explain what it was, but said they’d put me in a fake menopause with injections of a drug called Zoladex plus hormone replacement therapy (HRT) to combat side effects such as hot flushes.

"I was hurrying to pick up the kids from nursery, and I think I was in shock because I didn’t ask any questions, which isn’t like me. I had the injection, and when I got home I thought, ‘What have I done?’.

"The injection helped reduce the pain during sex, but it affectedly me badly. At first I felt great. I had so much energy. But it soon got worse. I was exhausted and emotional. I felt as though I had premenstrual syndrome every day. My bowels caused problems, and I became really bloated.

"After two months I came off the HRT and felt better. I stayed on Zoladex for four months, and stopped having periods during that time. I've been offered another course of Zoladex, but I’ve decided to wait for a few months before taking it."

Read more about endometriosis treatments.

Living with endometriosis

Michelle is now trying to live life with endometriosis as naturally as she can.

"I want to let my menstrual cycle get back to normal, and I’m keeping a diary of my symptoms so I can relate them to my cycle. I’m trying natural ways to improve my health. I eat more healthily, I’ve stopped having caffeine, I’m jogging, and I feel much better.

"The pain during sex has returned, which is disappointing.

“If a woman has been diagnosed with endometriosis, I’d want to reassure her that she's not alone. People worry about how the illness will progress, but it’s different for everyone.

"If you go to internet message boards and read about people who have a very bad experience of endometriosis, try to be objective. There will be people who no longer write messages because they feel better and are getting on with their lives."

Read more articles about periods.

Period problems

If problems with your periods are affecting your life, there's help and support available. Find out how to treat painful periods, heavy periods, PMS, ovulation pain and what to do if you're not having periods.

Most women have a regular menstrual cycle that's around 28 days long (28 days from the start of one period to the start of the next), and they bleed for three to seven days each cycle. However, some women experience problems with their periods.

Before you see your doctor about period problems, it can be useful to keep a diary of your symptoms throughout the menstrual cycle. This can give your doctor a detailed idea of what happens, and when, during your cycle.

You can read this whole article, or click on the links to go straight to the section you want.

Painful periods

Heavy periods

Irregular periods

No periods (absent periods)

PMS (premenstrual syndrome)

Endometriosis

Ovulation pain

Painful periods

Pain during periods is common. It's caused by the womb contracting to push out the blood.

Exercise may help to relieve the pain, and some women find over-the-counter painkillers, such as paracetamol or ibuprofen, work. Ask your pharmacist for advice.

If the pain is so severe that it affects your daily life, talk to your doctor. Hormonal contraception – such as the combined pill, the intrauterine system (IUS), the contraceptive patch or the contraceptive injection – can reduce period pain.

Read more about painful periods.

Heavy periods

Some women naturally have heavier periods than others, but if your periods are so heavy that they impact your life, there is help available.

Talk to your GP about your bleeding, including how often you have to change your sanitary protection (towels, tampons or menstrual cup).

Your doctor can investigate why you're experiencing heavy bleeding. These investigations may include blood tests and scans.

The National Institute for Health and Care Excellence (NICE) suggests a number of possible NHS treatments for heavy periods. These include:

• some forms of hormonal contraception, such as the intrauterine system (IUS) – which completely abolishes periods in many women – the contraceptive implant, contraceptive injection or the combined pill
• tranexamic acid tablets (taken for a few days around the time of your period)
• non-steroidal anti-inflammatory drugs (NSAIDs)
• progestogen tablets (containing a synthetic version of the hormone progesterone, released naturally in your body)

For more information on these treatments, see the NICE advice on treatment for heavy periods.

In some cases, surgery may be an option if other treatments don’t work, or if there are problems with the womb, such as fibroids (non-cancerous growths). Surgery may include removing fibroids, the lining of the womb, or the womb itself.

Read more about heavy periods, including treatment.

Use this tool to check if your periods are heavy.

Irregular periods

A period normally lasts two to seven days, with the average period being five days long.

However, some women have an irregular menstrual cycle. This is where there is a wide variation in:

• the time between your periods (they may arrive early or late)
• the amount of blood you lose (periods may be heavy or light)
• the number of days the period lasts

Irregular periods can be common during puberty and just before the menopause.

Find out about the causes of irregular periods, which can include a hormone imbalance and changing your method of contraception, and treating irregular periods.

Absent periods

Having no periods may indicate an underlying health problem. If this happens to you, see your GP. Periods can also stop as a result of severe weight loss, stress or strenuous exercise.

Read about absent periods.

Premenstrual syndrome (PMS)

PMS is thought to be linked to changing levels of hormones throughout the menstrual cycle. Not all women experience PMS, and among those who do, the range and severity of symptoms can vary.

Severe PMS can disrupt a woman’s personal and work life, making it hard to function in the days before her period.

Symptoms include:

• mood swings
• irritability
• depression
• headaches
• bloating
• breast tenderness

Symptoms appear and can intensify during the second half of the menstrual cycle, and then ease and disappear after the period has started.

The Royal College of Obstetricians and Gynaecologists has useful information on managing PMS.

Some women who experience PMS benefit from following general health advice, such as eating a healthy, balanced diet, reducing their alcohol and caffeine intake, and getting regular exercise to keep fit.

Cognitive behavioural therapy (CBT) may also help. CBT is when a counsellor helps you to recognise negative behaviours and work out strategies to change them.

Read more about counselling.

Various complementary therapies and vitamin supplements claim to help with PMS. While more research is needed, current information seems to show that magnesium and Agnus Castus can help some women.

Some complementary therapies can interact with medication, so get advice from your doctor before starting any.

Other PMS treatments include:

• a combined contraceptive pill
• certain antidepressants, such as selective serotonin reuptake inhibitors (SSRIs) or serotonin-norepinephrine reuptake inhibitors (SNRIs)

In some cases, there may be an underlying psychological condition that doesn’t go away when the period finishes. This is an indication that it's not a symptom of PMS. In such cases, treatment for the psychological condition may help.

Read more about PMS, including symptoms and treatment.

Endometriosis

This is a condition where the cells lining the womb (endometrium) appear in other areas of the body. This is usually in the abdominal area, including the pelvis, ovaries and fallopian tubes.

Period hormones cause the ovaries to release an egg and the womb lining to thicken. If the egg isn’t fertilised, the womb lining breaks down and bleeds, and leaves the body as a period. Endometriosis cells elsewhere in the body also break down and bleed, which causes inflammation, pain and adhesions (scar tissue).

Not all women have symptoms, but common symptoms can include:

• painful, heavy or irregular periods
• pain during or after sex
• infertility
• problems opening your bowels (passing stools)

These symptoms can signify a range of other conditions. A laparoscopy (a surgical procedure in which the surgeon looks into the abdomen with a small camera) is the only way to make a definite diagnosis.

Different treatment options include:

• painkillers
• hormone treatments – such as progestogen
• hormonal contraceptive methods – such as the combined pill, contraceptive patch or intrauterine systme (IUS)
• drugs that can cause a temporary and reversible menopause by stopping the body producing oestrogen

In severe cases, surgery can be carried out to remove the endometriosis or the ovaries and womb.

Some, but not all, women with endometriosis have difficulty getting pregnant.

Read more about endometriosis.

If you have missed a period and think you might be pregnant, find out the signs and symptoms of pregnancy and about doing a pregnancy test.

Ovulation pain

Some women get a one-sided pain in their lower abdomen when they ovulate.

The pain can be a dull cramp or a sharp and sudden twinge. It can last just a few minutes or continue for a day or two. Some women notice a little vaginal bleeding when it happens.

Painful ovulation can usually be eased by simple remedies like soaking in a hot bath or taking an over-the-counter painkiller, such as paracetamol.

If you’re in a lot of discomfort, talk to your GP about other treatment options. Birth control methods that stop ovulation, such as the combined Pill or contraceptive implant, can completely banish ovulation pain.

Read more about ovulation pain.

Read more articles about periods.