Could Endometriosis be the cause of being... - Endometriosis UK

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Could Endometriosis be the cause of being constantly tired?

Dancemetohell profile image
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Hi, I have been trying for about 4 years now to get a referral to a Gyno, and only just recently received one. I have done every blood test, every swab test, x-rays, ultrasounds, any test a doctor can do, Ive done it. 20 times over. I did swap doctors this year and the referral I finally got makes me sound like a complete idiot "we told her period pain is normal and she thinks sex hurts. She won't listen when we say that's normal"

I mean, I understand people can over exadurate their pain, but I know my body and what I can and can't handle.

So anyway, I've done nothing with the referral, as I am now hunting for a doctor that will actually listen to me, as that's two now that I've wasted time on. (And I don't really want to be on a holding list for a year to be checked) I've already been trying to get this sorted for what is now coming up to 5 and a half years, some of which Time I completely gave up on believing I'll ever be okay, I accepted fate that I'll probably always be in pain, ill probably never have kids and I'll probably always be wondering if someone listened to me in the start, if maybe I could have done something about both of those things.

But I'm determined again that there has to be someone out there that will listen to me, even if I am too late.

I have all the symptoms of endometriosis and have studied and read a lot about it, I only very rarely see that fatigue is part of it, and I've always just thought that the stress of pretty much being pushed aside knowing what is wrong with me, when I'm pretty much begging for a referral was the reason I'm so tired all the time. Was just wondering if anyone could tell me if they suffer fatigue with this?

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Dancemetohell
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Tillyfloss profile image
Tillyfloss

Hi. Sorry you are having such a difficult time with your doctors. Unfortunately the knowledge of endometriosis is so varied it's pot luck if you come across someone who gets it. Would you be in the position to get an initial private consultation? They can then usually put you back into the NHS system for further investigation.

Keep on it and get your referral, do you have pain between cycles? Have they prescribed anything for your pain?

I get very tired and have a limited amount of energy and if I push myself I pay for it. I mentioned it to the specialist at the bsge centre and he said it was common as your body will be trying to fight the endometriosis but doesn't win and this is draining on your body as it's always over working. Also said the chronic pain causes fatigue to.

Hope you get a doctor that understands soon.

Good luck. Xx

Mcfw profile image
Mcfw

Hi

I am totally with you on this one.

I reached the point of fatigue in January where I couldn't function anymore. It's tricky to put a finger on why or when I'd become so tired as mine was a combination of chronic night pain that had escalated for the last year and the draining nature of heavy periods and associated pain before, during and after each month. So, I guess the consequences of endometriosis rather than it causing tiredness.

My GP wasn't listening and had clearly made up her mind that my various pains were all psychosomatic as all ultrasounds and X-rays had come back normal and I appeared to have different pains at different times of the month. She had even passed on her views to other members of the surgery.

Eventually spurred on by exhaustion I had a melt down during a blood pressure check at the doctors surgery. My tiredness had hit an all time high and my blood pressure was reaching uncomfortable levels due to continual pain, the nurse commented that my pains were 'obviously not very serious or I would have them continually and consistently in the same place', and hypertension could be controlled if I got my stress levels down. I was dumb struck said nothing and returned home. I then phoned the surgery and wailed down the phone for an hour.

I was undiagnosed until the beginning of this month. I'd be on the waiting list for a laparoscopic hysterectomy to remove the uterus due to heavy bleeding and fibroids for over a year and had one on 3rd April. This is something I had to fight for and felt I had to justify continually with my GP or apologise for requesting right up until my admission.

My consultant was lovely and discussed leaving my ovaries etc as my GO notes didn't indicate any serious issues. During the procedure he found enough endometriosis, adhesions and scar tissue to warrant a complete removal of uterus, ovaries and cervix plus separation and repair to rectum, vagina and bladder.

I am in mild pain after surgery and still have a dull pain on my right when lying down. I was extremely tired for the first week after the general anaesthetic.

However, the overwhelming fatigue I have felt for the last year has gone. I feel fully awake and lively for the first time in two years and positive for the first time in 10 years. It's possible I am just relieved that somebody eventually did something about it and feel mentarily rejeuvenated.

If you can get somehow get passed the GP to a consultant you stand a better chance getting heard and looked at. The private GP referral is not a bad idea. In desperationI saw one before Christmas to rule out cancer and she mentioned endometriosis immediately and said I should keep on at my GP.

Sorry this is so long, buy hope it helps.

Starry profile image
Starry

All I suffered from initially was painful sex and fatigue along with back pain I blamed on a disc problem and periods that I thought ( had been told and eventually believed) were within normal pain ranges but with hindsight were not.

I was laparascopically diagnosed with severe deep recto vaginal endo in December and have a 2 cm nodule attaching my cervix to my bowel and distorting it anatomically with adhesions.

Yes fatigue can totally be an endo symptom be due to chronic pain or inflammation. It can also be caused by other things like hormone imbalances as well though.

Do persist and seek out a sympathetic GP. Endo symptoms don't have to correlate to the severity of the condition. X

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