An estimated 10 percent of all women of childbearing age are affected by endometriosis, a painful disorder in which tissue, similar to the tissue that normally lines the inside of your uterus, grows on one or more organs.
Endometriosis most commonly affects the uterus, ovaries, fallopian tubes and the tissue lining the pelvis.
Because of the areas it occurs, it often causes debilitating period pain, discomfort opening the bowels and/or bladder, heavy periods and pain or discomfort during sex – yet’s it commonly confused with IBS or pelvic inflammatory disease.
Even worse many women go undiagnosed for years which can in some cases can cause infertility.
Last September,Love IslandstarMolly-Mae Hagueshared the news with fans that she was having an operation set to help her manage her endometriosis. But recently was dismayed to tell fans that it had not been a success.
Other celebrities who have been open about their conditions are Emma Bunton and US creator of Girls Lena Durham, who underwent a total hysterectomy in 2017 and continued to share the fallout for her mind, body and relationships.
OK! exclusively asked Dr Chris Guyer, a Consultant and Endometriosis Specialist, for all the questions all concerned women should know…
What should you do if you think you have endometriosis?
Our advice has always been that if the pain doesn’t seem like an ordinary period pain, then seek advice from a GP who should be able to explore the possibility of endometriosis. It’s important to press for a diagnosis to be made as soon as possible.
Many of our patients seek a private diagnosis if GP waiting lists are too long. Women are now more empowered to find their own specialists thanks to online enabling them to explore options. TFP Fertility Group can also advise on specialists.
How can endometriosis affect fertility?
Most women who have endometriosis will find it will have some impact from a fertility perspective – fortunately, the majority will still be able to conceive naturally.
It may take them a little longer, but they will still conceive naturally, because the vast majority of women will have what will be characterised as mid or minor endometriosis affecting them.
Those who have more of a severe disease will start to have problems fertility wise mostly because it will alter the anatomy in their pelvis.
We suspect that there is also some impact that the inflammatory response has on maybe egg production, maybe fertilisation, maybe sperm as well, as it may make a hostile environment for the sperm.
So quite often these women, if they are going to have any treatment will end up in a fertility clinic and will often require IVF treatment to help.
What is your advice for sufferers trying to get pregnant?
If you see a delay in conceiving naturally you should seek advice from a fertility specialist at the earliest opportunity.
They may need further diagnostic tests to work out what is going on, and may require fertility treatment in the form of IVF.
With this condition it is important to speak with a specialist when they know they are wanting to start trying for a family.
What if you don’t know you have have endometriosis while trying for a family?
Some women don’t have symptoms, or feel that their symptoms aren’t a problem, but they do have endometriosis.
It won’t be until they are trying for a pregnancy they realise there is a problem. They will fit into what most clinics will classify as ‘unexplained infertility’ or ‘sub fertility’ at that stage.
They may require a laparoscopy before they pursue fertility treatment, which may also enhance their ability to fall pregnant naturally.
Once that diagnosis is made, the suggestion is that they should plan to pursue fertility treatment at the earliest opportunity rather than leaving it.
What are the treatments for endometriosis?
Each case is different. However, to give some background, there are usually three lines to treatment which includes pain management (given that pain is the main symptom) which comes in various guises, so this is often one of the first things we treat.
That may be exploring anti-inflammatory medicines combined with a pain relief.
Outside of that there are hormonal treatments – commonly that could be the contraceptive pill, so a combined pill with oestrogen and progesterone or progesterone on its own.
Both of those preparations are designed to try and suppress some of the hormonal drive to Endometriosis and reduce the inflammatory response that you get from it.
There are other hormonal treatments but usually those would be under the guidance of specialists where you are suppressing the ovaries much more than you normally would do with the standard hormone treatments.
The other side of it is surgery to try and remove the endometriosis, which is usually done with a procedure called a laparoscopy.
How does a laparoscopy work?
It’s a procedure done under general anaesthesia which is usually done as a day case.
A little camera (the laparoscope) goes through an incision made in the belly button area, which gives an opportunity to see inside the abdomen and the pelvis, making it possible to see the obvious signs of endometriosis forming.
That also gives the ability to remove the disease with the aid of the laparoscope at the same time of making the diagnoses.
Does that ‘cure’ endometriosis?
It doesn’t mean it will be completely removed. It should be considered as a chronic condition, and all treatments put in place are to manage symptoms but won’t always eradicate it.
Even with surgical removal, there is a possibility that the condition will come back over the course of a few years. Whilst women are still producing cyclical hormones and having periods, endometriosis can continue/reoccur.
Our role is to help manage the symptoms and any fertility problems that crop up as a result.
What problems does endometriosis cause in daily life?
The pain can have an impact on normal activities and work, so women are calling in sick.
It can also impact on relationships and sleep, which develops into other symptoms like insomnia, fatigue, anxiety, depression, all these symptoms will often be an offset of trying to cope with the pain and stress.
The awareness of endometriosis within the workplace will only come with better understanding and recognition. There has been a recent parliamentary debate about endometriosis and work. It is important to keep the conversation going in order for action to be taken.
Will there ever be a cure for endometriosis?
Work is being done to improve treatments, however more investment is needed to help understand the condition and why it occurs in the first place.
There is ongoing research, as there may be some underlying genetic pre-disposition that alters the immune system that allows for endometriosis to occur.
Why does it take so long to diagnose endometriosis?
Historically, many women will visit their GP, however it’s often mistaken for menstrual symptoms, especially when women first start their periods. This will be managed with pain killers or the contraceptive pill without a diagnosis being made.
There is then a delay in the diagnosis and many women aren’t getting the opportunity to see a gynaecologist.
Endometriosis UK data showed that the average time between the onset of symptoms and when diagnosis was made was around seven years, for some it’s even longer.
We hope that the new cohort of GPs coming through are more familiar with symptoms to reduce that timeframe.
Are there any lifestyle changes that could help manage symptoms?
Many women make dietary changes to manage their symptoms, however some women get misdiagnosed with having IBS.
There are other treatments such as acupuncture, reflexology and mindfulness – all of these are tried with varying degrees of success.
Are there any foods or supplements that can help manage the symptoms?
There has been some talk of spices such as turmeric and curcumin helping some women, however, there is still no strong scientific study to support this.
‘I can’t believe my beloved baby is finally here’
Diana ,35, from Basingstoke was diagnosed with endometriosis, cysts on her ovaries and fibroids resulting in numerous surgeries. But with the help of the TFP Fertility Group Diana and husband Moses, 38, finally welcomed baby Siima in November 2019.
“Eighteen months after we married I stopped taking the pill as we wanted to try for a baby. I had always had very painful periods from when I started aged 14, but when I came off the contraceptive pill they got heavier and more painful.
“I conceived naturally at the end of 2011 but had a miscarriage, then another in 2012. another miscarriage. I continued to suffer with stomach pains and high temperatures but was given antibiotics.
Only seven years later a gynaecologist finally diagnosed with endometriosis, and cysts on my ovaries and fibroids, which are common in black women.
“We continued trying but we weren’t successful. Our doctor referred us for fertility treatment – an emotional and painful journey.
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“At TFP Wessex Fertility the doctor explained that our case was really complicated due to the miscarriages, fibroids, polycystic ovaries and painful periods. I suffered another miscarriage while waiting for treatment, it was a twin pregnancy.
“We had to wait another 12 months to start treatment again and qualify for NHS funding. I was really stressed and depressed.
“In March 2017 I met with Wessex Fertility again and we started IVF again. We had our first transfer on our seventh wedding anniversary and I felt it was a confirmation from God. But that baby too I lost, and another one. I wasn’t sure I could do it again.
“My endometriosis was also getting worse. I decided to have my ovaries and uterus removed. It felt like such a big decision but the consultant performed the surgery and did his best to protect my tubes and uterus whilst removing the endometriosis.
“Next I tried a PGS biopsy (pre-implantation genetic screening)*. After contracting the Zika Virus and spending two days in intensive care, I can happily report that finally, finally, on 1 November 2019, our baby girl Siima – meaning thankful – arrived. “I cannot believe she’s actually here. We love her so, so much,” said Diana.
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