Seven reasons why Endo-Fatigue causes so much trauma to its sufferers

So glad I found your article! I’m not sure if I have it. I’m 24 and since having my first periods (around age of 13) it has been a struggle. Once is struck me at school,during the lesson,teachers wouldn’t let me go home and was sitting ,meddling, with painful expression on my face, holding my stomach ,couldn’t get past the pain and the whole class was staring at me.
Now it got worse. I usually have 2 hours of severe pains,really bad pains ,like someone is stabbing me in my belly and keeps turning a knife sideways,it comes in waves, I usually fall asleep after 1hour of pain and nausea. Worst thing is fatigue is getting worse,my blood is not good and I can’t go up the stairs sometimes. I live alone and have savings but now I must go look for a job but can’t , have no energy or motivation. GP prescribed me some mefenamic acid and contraception but I don’t have sex that often. My grades are going down. I don’t want to travel anymore, lost my friends and nobody understands it. Fatigue is really getting worse 😦 i went to work once,as usual, but then stood for a minute on my way to the by stop being unable to catch a breath , I had to sit down, so went straight home crying and feeling like crap. Before it lasted only 1 week before/after mens. Now it comes whenever it wants to,feels like you have a flu . No idea what is happening,going to doctors doesn’t help…

LikeLike

Thank-you, thank-you, thank-you so much for this thoughtful, heartfelt and insightful article. What you wrote describes my situation to a tee – as it probably describes the situation for so many women with Endometriosis. It’s good to find articles that truly articulate the plight of women with this disease, especially because there is so much ignorance and lack of compassion surrounding Endometriosis.

I, myself, blog about my experiences. I write Facebook pages about Endometriosis and living with it. I guess this gives me some sort of an outlet for all the feelings I have about the disease. Besides, when us women with Endometriosis take the trouble to write about our experiences, we are doing something very positive. We are spreading information about the disease and its symptoms. We are sharing our insights, and our coping strategies. We are able to provide advice about different types of treatment, or about how to get a diagnosis. Even if we are still suffering (because Endometriosis never seems easy to get rid of!), we can do something to reach out and help other women with this debilitating disorder.

I totally get where you are coming from in respect of the fatigue that goes alongside Endometriosis. I totally appreciate your attempts to explain why Endometriosis makes women feel this way – a lot of what you write makes real sense. Personally, I believe that what makes Endometriosis so difficult to live with is other peoples’ attitudes to it. And that includes medical professionals. People can be so insensitive!

I started with symptoms @ 2002, but did not get diagnosed with Endometriosis until 2011. That left me with NINE years of being fobbed off, lied to and ignored. Doctors are really pretty ignorant and uncaring when it comes to Endometriosis symptoms. They never seem to listen to you, and they just tackle each symptom individually, never linking anything up to come to the correct diagnosis. I had multiple symptoms including fatigue, nausea, bloating, menstrual cramping, heavy periods, irregular periods, flooding, blood clots in periods, painful ovulation, severe lower back pain, terrible pelvic pain, left hip pain, upset stomach… My G.P. (who, ironically, was a woman!) was absolutely useless. Sometimes I would see different G.P.s but this only made it worse, because each one had a different idea about my symptoms. I was told I had IBS, told I had possible food intolerances, diagnosed with Post Viral Fatigue Syndrome. I was told I was stressed, unable to conceive because of anxiety. I was told it was “all in my head”! They attempted to fob me off with antidepressants! During all this time, nobody thought to refer me to a Gynaecologist, despite the fact that I was regularly complaining about my menstrual cycle, and had Anaemia (for which I was being treated) due to heavy periods! I ask you – since when did stress, or anxiety, or food intolerances cause heavy periods and menstrual cramping?

Finally, in 2006, I was referred to a Gynae (who was rubbish!). Again, I was misdiagnosed, this time with Polycystic Ovaries, which I actually had NONE of the symptoms of – except that a scan showed CHOCOLATE CYSTS (a symptom of Endo) on my ovaries! This Gynae did absolutely nothing for me other than ask me to attend a Polycystic Ovary clinic, where they did nothing other than weigh and measure you. The ONLY women who got “treatment” at this clinic were MORBIDLY OBESE women with PCOS who were given Metformin to reduce their weight. The gynaecologist never even appeared at the clinics, and usually I saw only locums. As I was not overweight, they did nothing for me. I even had one locum who suggested I had Endometriosis, but was ignored. Obviously, I demanded a second opinion with another medic, because staying at this clinic would mean never getting treated. I finally made a complaint about this Gynaecologist, only to be told that he had DIED of ALCOHOLIC LIVER FAILURE. It turned out that he had been running research into the weight loss effects of Metformin. I mean, honestly? Was he really bothered about Gynaecology? Or was he really just peddling “diet pills”?

Meanwhile, I was referred to a Dietician (no use!), to a Gastro specialist (had endoscopy that showed I did not have Crohns, or Caeliac ) who said the problem was most likely OUTSIDE my bowel and suggested Endometriosis but was ignored, put on the Pill (which made me feel really ill), put on the Mirena (which slipped, and was agony, so got removed)… and just generally fobbed off from one person to the next. My boss at work (I worked at the same Hospital that had the terrible Gynaecologist, above) was deeply unsympathetic, and treated me like I was a hypochondriac or malingerer. He complained when I had to take time off work to attend medical appointments (even though this was necessary and unavoidable), threatened to put me on report, said “it’s only period pain”, told me to work through it by “taking an Aspirin”, and when I had time off work, he would phone me at home demanding to know when I was coming back in and telling me that I was “letting the team down”. You know the most shocking part of it all? My boss was a TRAINED NURSE! Talk about being in the wrong profession! Because, in HIS words, I “did not have a definitive diagnosis”, he refused to believe I was ill.

I only got diagnosed after I googled Endometriosis online and took a printount of the symptoms to my G.P., then demanded a second opinion. In 2011 I had my first Lap surgery which went wrong (please, if you’re reading, DON’T accept treatment at Blackpool Hospital, as they are NOT qualified to treat Endometriosis). They did laser ablation and caused considerable scarring. They also tried to discharge me from Hospital whilst I was still nauseous and vomiting into a paper cup! After the surgery I was in screaming agony, and ended up at A&E THREE times because the pain was so bad I could not even move. My back felt all twisted up, I had muscle spasms in my hip, and my body would lock in position. I ended up on oral Morphine, plus crutches!

I then did another google search, and discovered that Endometriosis specialists exist. It pays to do your homework! I demanded referral to one, and ended up having a further FOUR surgeries, including RADICAL EXCISION, It turned out I had Stage Four Endometriosis, with Deep Infiltrating Endometriosis that had grown inside my Uterosacral Ligaments. Deep Endo is a really bad thing if you get it – it’s harder to treat and causes really bad symptoms. It’s usually very difficult to locate too, so inexperienced Gynae surgeons may miss it.

Believe me, I know all about pain, fatigue, nausea, upset stomach, period troubles! I also know much about the uncaring and unsympathetic attitudes that far too many ignorant people have in respect of Endometriosis. I know how hard it makes life. I know how much you have to fight for everything – even just to get people to believe you, and support you. I guess the way I got through it all was to be really stubborn. You need a LOT of determination to cope with Endometriosis (and with the crass attitudes of some people when you tell them you’ve got it!). Fortunately, I’m tougher than people believe. I’ve managed to complete a Postgraduate course whilst having multiple surgeries (I left work due to bullying – mostly related to my symptoms). Endometriosis IS NOT going to stop me!

True, I miss activities I can no longer do – such as aerobics, mountain biking and horse riding. I know I am not as fit and toned as I used to be because strenuous exercise is painful in the extreme. I am sad about the fact that I have been diagnosed with infertility problems, so I’ll probably never have kids. I was in my late thirties when my Endo was finally diagnosed, and I was told I’d need IVF to conceive. Where I live, the cut off point for NHS funded IVF is 38-39 years, so by the time I had completed all my surgery, I had missed out. I think that this arbitrary cut off age for IVF is very unfair, as it does not take account of women who have problems such as Endometriosis and need diagnosis and treatment for this BEFORE they can even consider IVF. I am sad about the loss of some friends and family-members, who I choose no longer to see because they have been so insensitive and uncaring about my Endometriosis. For example, my own brother-in-law dismissed it as a “trivial illness” (he said this to me the day before I was due in Hospital for surgery)! Still, I can well do without such thoughtless, ignorant people in my life.

Apologies for the very long reply, but I was really struck by your article. Women with Endometriosis and its symptoms need ways of reaching out and connecting with each-other, and people who write about Endo kick-start this. I hope that anyone reading my experiences, here, can find things to identify with, and can understand that they are not alone. I hope, too, that there may be tips that I have given which help. If you feel you are suffering from Endo:
1. Keep a diary of symptoms, describing what they are and when they occur. Take this to medical appointments with you.
2. Keep a record of all the treatments you try – what works and what doesn’t. Take this to appointments, too.
3. Don’t feel coerced to accept treatment you don’t want. You know your body best. Choose a treatment that suits you, and your lifestyle.
4. If referred to a Gyne, make sure this person is an Endometriosis Specialist. You can find a list of UK approved specialists at this website – bsge.org.uk/endometriosis-centres
5. Research the illness – good support is available from charities such as Endometriosis UK who have a website (just type Endometriosis UK into a search engine), and helpline (0808 808 2227). Also, try searching Endometriosis Explained, Fighting Fatigue, Cure Endometriosis, Living With Endometriosis, and Endoresolved.

Hoping some of this helps. Again, thanks for the article. Best wishes to all. E. x

LikeLiked by 1 person