It’s Endometriosis awareness month and I want to give you some information on the common women’s health problem that could be masked by your fibromyalgia…
This post was originally posted on February Stars blog and has been reposted here with their permission.
One in ten women of reproductive age suffers from Endometriosis. The problem is, not all of them know it. Many of them haven’t even heard of it.
It’s a disease in which tissue similar to the Endometrium (the lining of your womb that sheds when you have a period) grows outside the uterus, causing inflammation, pain and fatigue, amongst other symptoms.
It takes an average 7.5 years from the onset of symptoms to get diagnosed.
But when you have a diagnosis of Fibromyalgia, this complicates things further. Any new pain is notched up to “just your Fibromyalgia.”
That “just” can hurt. Fibromyalgia is an intensely painful disease. But Endometriosis is far from just period pain. For some, it can cause widespread month-long pain.
And that is why, for me at least, my Fibromyalgia diagnosis meant my rheumatologist, GP and myself stopped looking for answers when in reality Endometriosis was raging inside of me.
What is Endometriosis?
As I mentioned above, Endometriosis is a disease in which tissue that resembles the lining of the uterus grows elsewhere in the body.
It usually grows in the pelvis but can be found in other places in the body. I myself have it on my diaphragm. It can also, rarely, affect men.
Your body isn’t too keen on this. The Endometriosis directly irritates nerves, creates an inflammatory response, which has wide-ranging effects on your body, and as the tissue around the Endometriosis breaks down and bleeds, your body creates scar tissue called adhesions, which can stick your pelvic organs together.
It can also infiltrate organs like the bowel (another one I have) and the bladder, causing even more problems. The adhesions can also cause issues with any organ they are tying down.
It was originally thought to be caused by the womb’s lining “migrating” to elsewhere in the body, but Endometriosis is actually different to the endometrial tissue found inside your uterus.
In fact, one piece of research found Endometrial cells already implanted outside the womb in female foetuses.
Plus, teenagers can become symptomatic before their periods actually begin.
I was told, when I complained of particular pain and fatigue just before and during my period that this was “normal for Fibromyalgia”.
Two years later when a Gynaecological surgeon saw inside me, he was shocked at how bad it was. I had Endometriosis and adhesions everywhere. I was stage 4, which means the disease was severe.
He said: “I’m really surprised you don’t have more symptoms.”
At that point, realisation dawned on me. I had gone to them complaining of only one, newish, symptom: pain during sex.
But it was not my only symptom. “I do,” I tried to explain. “But I was told it was down to my other illnesses.”
What are the symptoms of Endometriosis?
A lot of the early symptoms of Endometriosis are put up with by women because they are told it is normal to be in pain during your period.
Some discomfort is normal, but women end up putting up with more than a bit of mild pain because they think they have to.
Equally, with Fibromyalgia you may have heard that other women also deal with a lot more pain and fatigue during their period, and so you just notch it up to another symptom of Fibromyalgia.
The Center for Endometriosis has some great information about Endometriosis. I have adapted this symptom list from theirs, which can be found here.
You do not need to have all these symptoms and they are not necessarily limited to the time around your period. They can be chronic in nature.
By the time I was diagnosed, I had constant pain despite stopping my periods using the Progesterone-only pill.
The common symptoms of Endometriosis are:
- Painful menstruation (I find that the pain actually starts before my period does)
- Pelvic pain other than period pain
- Back pain
- Pain during sex
- Pain caused by bowel movements
- Fatigue (For me this got worse the week before and during my period, and then I spent a week recovering from it, so I spent most of the month struggling with extra fatigue).
- Bloating (women often complain of looking pregnant because of this)
- Constipation
- Diarrhea around the time of your period
- Pain during exercise
- Painful pelvic exams
- Pain during urination
- Sciatic pain
I also suffer from pain down the front of my legs and pain in my right shoulder, the latter of which is caused by the Endometriosis on my diaphragm.
How do you get diagnosed?
You may have already gone down the route of investigation, had a Trans-vaginal-ultrasound and told your uterus is healthy and basically, there’s nothing wrong with you.
This by no means rules out Endometriosis. In fact, it rarely shows up on these scans unless you have an obvious Endometrioma, which is a cystic mass caused by Endometriosis.
It makes me very angry how often women are turned away at this stage and told they are fine when they are far from it.
The only sure way to diagnose Endometriosis is by Laparoscopy, which is keyhole surgery to look inside your pelvis.
This sounds drastic and scary I know. I was told by my gynaecologist when I said I wanted to go ahead with the operation that one of the risks was that they might go inside me and find nothing.
I so nearly stopped pursuing diagnosis at this stage. But actually, the operation wasn’t that big a deal.
I’m virtually housebound by ME and Fibromyalgia and I found recovery fairly easy. I know this might not be the same for everyone though.
For me, it was worth it.
What are the treatment options?
This is one of the areas that makes me hate reading about Endometriosis in the media. The information about treatment is so often wrong.
And actually, while the information is out there on how best to treat Endometriosis, it has not been picked up by most of the medical profession (including supposed specialists).
You have to make sure you learn the facts about Endometriosis so you can know when you are being subjected to outdated theories and misinformation.
There is an education group on Facebook called Nancy’s Nook, which was started by Endometriosis advocate Nancy Petersen. This is where you can learn the facts and find the, unfortunately rare, specialists who treat by the most effective methods.
I want to summarise the options for you. But I think I will also need to do some myth busting here too.
- Symptoms can sometimes be managed by hormonal contraceptives. This is a band-aid, it won’t treat the disease, but may give a lot of relief. Unfortunately, it doesn’t work for all women and can stop working as the disease progresses.
- A lot of women are told treatments like Lupron, which causes a medical menopause, will cure their Endometriosis. This is not the case. It can reduce symptoms but does not treat the disease and can have serious long-term side-effects.
- Worryingly, many women are told a hysterectomy will cure their Endometriosis. This is not true.
- Endometriosis is, by definition, a disease that occurs outside of the womb. It creates its own oestrogen, so even if you remove your ovaries, this isn’t going to do anything about Endometriosis that isn’t on the tissue you are removing. However, there is a condition called Adenomyosis, which I am also suspected of having, which causes very similar symptoms.
It is where Endometrial tissue grows inside the muscle wall of the uterus. A hysterectomy does cure Adenomyosis but if you also have Endometriosis, you will need to deal with both.
- Diet is another area that gives some women relief. It, unfortunately, does nothing for me but can be a helpful management tool for some. Women seem to be very individual as to what does and doesn’t help them but things that tend to be cut out are lactose, sugar, gluten and nightshades.
- Excision surgery by a skilled specialist is the Gold standard of treatment. Unfortunately, a lot of surgeons will use ablation.
- Ablation is where they burn off the Endometriosis. The problem with this is that it is very hard to tell if the whole thing has been removed and if the Endometrial tissue is not entirely removed it will continue causing problems and return to its previous state.
In excision surgery, the Endometrial tissue is removed completely.
Think of it like this. You have a garden with a lot of weeds in it. Ablation is like going in with a shovel and hacking off the weeds from the top. You may remove the entire thing but you more than likely will not and it will grow back.
Whereas, excision is more like digging the weed up carefully to get all the roots. This is much more effective.
But you need to see an expert excision surgeon to get the best results.
Many surgeons are not skilled enough to identify Endometriosis in all its forms, and may not look for it in a wide enough area.
Worryingly, women are often being told they had excision surgery but find out when they request their notes that they actually had ablation or a combination of the two.
This is depressing to read I’m sure. But there is good treatment out there. You just have to hunt it down.
The word “cure” is very controversial in the world of Endometriosis. There is no cut and dry cure like the rather drastic one in Adenomyosis.
But the surgeon’s listed in the Nancy’s Nook group have much lower recurrence rates than other surgeons because they are experts at finding and removing it.
There can also be other problems that arise in addition/ because of Endometriosis. Women can develop pelvic floor dysfunction where muscle builds and tightens up because it has been irritated for so long and new adhesions can form after surgery as the body heals.
And conditions like Adenomyosis, which is very hard to diagnose, may also complicate matters.
The experts will know about these things and help you to identify them if pain continues after your Endometriosis is removed.
Unfortunately, many standard specialists will not do this and will leave women in pain because they believe the disease has been adequately treated.
You’ll probably want to know if I’m “cured”. The majority of my Endometriosis has been removed. I still have some on my diaphragm and deep infiltrating endometriosis on my bowel.
These will need the expertise of additional specialists and so the plan is to deal with them at a later date.
But a sudden rise of pain several months after surgery has cemented my specialist’s suspicions that I have Adenomyosis too (the appearance of my uterus was lumpy for someone who is yet to have children) and I probably also have some new adhesions.
So the journey is not a simple one, but hopefully, I will get there eventually.
Why haven’t I heard of Endometriosis?
Good question. The amount of women who suffer from Endometriosis is on a par with the those with diabetes.
Yet I hadn’t even heard of it until my mid-twenties and I didn’t know enough about it to start considering it until I googled what a laparoscopy was used to identify after my gynaecologist suggested it.
When I got diagnosed, I wrote a whole angry post about why I think I was left undiagnosed for so long. In hindsight, I’d had symptoms since my very first period.
One of the issues for me was my Fibromyalgia diagnosis masking my problems.
But I don’t think it was the only issue at play.
A big problem is that I did not go and seek help with my symptoms until they were really bad. There is a certain taboo about talking about periods, which means we don’t learn what is and isn’t normal from our peers.
I knew I had a heavier flow that most of my friends and that was about it. I still have no idea if any of my other friends were up all night clutching their belly in agony the day their period started (luckily that wasn’t the norm for my periods).
Women seem to get it drummed into them at a young age that pain is normal during your period and you have to put up with it.
It is true, to an extent, but when it’s stopping young girls going to their doctors when they are in an abnormal amount of pain, then we need to address the expectation that women have to put up with pain.
Another issue is medical sexism. Donna at February Stars blog wrote a great article about this which outlines all the issues.
But the bottom line is, women’s pain is not taken as seriously as equal pain in men.
I can tell you now, if I was healthy and I got the pain I have experienced with Endometriosis out of the blue, I would be heading straight to the emergency room.
So don’t suffer in silence and don’t suffer unnecessarily. If any of what I’ve written strikes a chord with you, make sure you have your symptoms properly investigated.
This is not a rare disease. There is a one in ten chance, if you are a woman, that you may be suffering from Endometriosis.
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Hi Laura,
This is an excellent run down of the symptoms and what Endometriosis actually is. As you say, not a lot of women are aware of what it is until they have to deal with it.
It’s great that you’re spreading awareness about a disease/disorder(?!) that affects 1 in 10 women (I liked your Facebook pic #1 in 10!).
Similar to you, my illness was masking Endometriosis as it presented in blood clots in my urine and lower back pain. I have kidney disease and thought maybe the pain was something to do with that, though the pain was different and I explained as much to my surgeon. I believe the Endometriosis had an adverse affect on my health as my kidney function (before Endometriosis was sort of diagnosed) was going up and down and correlated with the severe pain I was having in my lower back. To this day the doctors refer to my Endometriosis as ‘suspected’ because they can’t do a Laparoscopy as I’ve had so much surgery on my abdomen and there is too much scarring (apparently Endometriosis is also more likely if a woman has had multiple surgeries because of the tissue scarring, so yay!) Anywho, I’m lucky that the pill has helped the symptoms subside, so the pain is manageable.
I am glad to hear that the majority of the Endometriosis has been removed and hope you don’t have to deal with it for a good long while. And once again – great post!
Kate x
I was diagnosed at age 21 (1994) with Stage 4 Endometriosis after several years of being told it was ‘normal’ to be in such pain that I passed out. 12 surgeries, four miscarriages and removal of ovaries/hysterectomy later, I had about 5 good years of no pain, before pain returned almost as bad as before. A few years later, I became so disabled I had to quit my career as a criminologist, separated from my husband (who hadn’t seen me before the hysterectomy so didn’t quite believe anyone could be that bad) and found out late last year that I did indeed have fibromyalgia which was ‘hidden’ by the endometriosis. So slightly backward to your blog but it is amazing how much research I found showing these two conditions are linked with women who have endometriosis being 80% more likely to suffer from fibromyalgia. I can’t have any more surgeries as the scar tissue is too great, my weight gain (from some steroid based hormones) is too great and that my heart would likely give out anyway due to the stress. I have a whole cupboard full of medication, work only part-time (and even struggle with this) in a semi-related area of my former career and live in sheltered housing as being alone is too dangerous. I’m beginning to think I should have gone to Switzerland when I had the money and finished myself off with dignity in their right to die clinics. Nobody other than those who have these conditions can ever truly understand how difficult life is with them; the constant battle to ‘pretend’ to be having a ‘good’ day, no social life as I daren’t risk being too far away from home when I have a flare up of pain, no sex in the last few years because of the pain, no children because of the pain and surgeries and minimal social life for all those reasons. Thanks for your blog; people need to be aware of the conditions and understand why it is so difficult to cope. I have long believed that if men had endometriosis and if fibromyalgia was as common in men as women, the disease would be on a par with prostate cancer for awareness, funding and research. AND women without the condition are often worse than men and often believe that such conditions are either exaggerated or non-existent; despite having a female Prime Minster, I am shocked at how little these conditions, particularly endometriosis, have been discussed at national and/or international levels with greater levels of education for schools and the country as a whole. I may not be suffering from a terminal illness, but with the pain, drugs, etc. I often wish I was – very few other diseases will result in patients preferring a diagnosis of terminal conditions than endometriosis.
I’m so sorry to hear your story. It upsets me how little effort goes into researching/learning about this disease and how often women are dismissed. I’ve had ME for years and it is a condition completely ignored by Govs and the medical profession and so little money goes into biomedical research. I thought it was because, as yet, there is no test to prove the disease is there. But then when I entered the world of Endometriosis I was appalled to find the same problems in a disease that can actually be physically seen. Patients told its in their head because the surgeon thinks he’s cured them so they must be imagining the pain (or given no surgery because their pain can’t be that bad). Women seen as hysterical. Doctors at every level giving out bad advice and bad treatments without detailing the risks.
I can’t explain the feeling I had when my current surgeon saw me after surgery and said it was really bad, it would have been causing me a huge amount of pain and he was incredulous that it had got so bad before I was diagnosed.
How can a disease that affects 1 in 10 women take an average 7.5 years for diagnosis? Doctors should know this disease inside out, it affects so many of their patients
This is the most well-written article on Endometriosis I have come across. I spend countless hours researching and reading about Endo, had multiple surgeries, and talked with many “specialists.” Most of the articles I have come across are grossly flawed. It is so disturbing the level of disinformation there is among patients, doctors, and surgeons. Early this year I read an article in a magazine and watched a news interview by an actress who is championing some sort of awareness campaign. I was irate, in public just scoffing and cursing because she is educating millions and nearly everything she wrote/said is wrong. I don’t understand this because, with just moderate effort, care, and research one can find the truth relatively painlessly. I guess people just don’t have the time? Anyway, thank you! I will be sharing your post with many friends and family.
Very well written. In my case, things were reversed. I had Endo diagnosed when I was 12, it is hereditary for the women in our family and Adeno suspected several years ago. The pain from Endo is excruciating. My sister, mother and I would all spend at least 2 days laying on the bathroom floor every month. At the time (26 years ago), all the doctors would do was prescribe Naproxen for flares and then the decision was made to stop our periods altogether as it was thought this would cure the Endo… It does not and I am so glad to find an article supporting this. Thank you for sharing what you have gone through and more importantly what you have learned.
If only my other issues would not have hidden my Fibro for so many years, I might actually have been getting properly treated instead of the bandaids as you call them.
What an amazing, filled with value post!
My wife suffers from stage 4 endometriosis and fibromyalgia. I am almost 100% sure that fibromyalgia is the cause of trauma from her diagnosis of endometriosis. Most chronic illnesses originate later in life from childhood trauma. That was the case for my wife.
What strikes me the most is that doctors wrongly teach people, that they can treat their painful symptoms with painkillers. Unfortunately, the truth is that you cannot treat chronic pain with the mindset of acute pain management.
Thanks a million for the value that you provided in your post, Laura!
Lucjan (a husband behind chronically ill wife)