Don't Stop Knocking on the Doctor's Door! 20 Years of Pain Before my Diagnosis. This was Never Solely IBS!

[Smiles-are-free]

I want to post this as encouragement for all those who know there's something wrong but have been told to do some yoga and take a few pills.

I battle with a chronic illness.

To all who have prayed, listened, cared, supported, not given up when I almost did, and have been there for me- thank you.

For the last 20 years or so, the main symptom has been almost unrelenting pelvic pain, which has been there day and night, plus heavy, agonising periods. This, I was told, was due to IBS (Irritable Bowel Syndrome), a colon which didn’t work, and “bad luck” on the periods front.

Most days have felt like I’ve swallowed shards of glass which wouldn’t move. Sometimes it has been mild enough for me to stand and cook a meal, yet often so painful I struggle to stand up to brush my teeth. Sleep has become a luxury. Eating - often a chore. And to accompany all this... a frequent dose of migraine.

I could only ever pass waste by using enemas or suppositories. Nothing moved, until excruciating cramps and diarrhoea forced the issue.

I have often felt exhausted after getting through a day at work.

Any of you living with chronic pain will know that this in its self is a full time job. It drains you, when all of your resources are ploughed into functioning. (Getting out of bed, showering, driving, walking, sitting, standing). Any extra energy for decision making, planning, focusing on a task, has to come from somewhere. But you're at your limit.

To be in pain every day is shattering.

I don't LOOK ill and I wouldn't want to. It’s a cliche, but please, never judge a book by its cover.

20 years of desperately searching for relief have led to:

acupuncture

antidepressants

anti-stress courses

barium X-rays

colonic irrigation

colonoscopies

detox programs

elimination diets

enemas (daily)

fasting

gastroscopies

IBS pills and potions

infection screening

intolerance testing

keyhole surgery

MRI

osteopathy

reflexology, and several more besides.

All of these can be hugely beneficial, providing both answers and healing. Yet for me, the pain and multiple other issues remained.

(I would also dread flooding onto my chair at work during my period, and it would sometimes soak through my trousers).

A new doctor suggested I could have endometriosis. It could have been missed during the previous surgery, and the procedure has advanced in recent years.

My surgery was 6 weeks ago...

I have endometriosis.

They removed it from several places. Both ovaries my appendix. One ovary and my appendix had stuck to my pelvic wall.

But on average, diagnosis takes 7-10 years, and approximately 10% of women world-wide have the condition

Heavy, agonising periods are not normal.

Persistent pelvic pain is not normal.

Chronic fatigue is not normal.

Please let’s increase awareness. I know how debilitating IBS can be. I may well have that as well. But I also knew this was more than IBS.

Since my surgery I've passed waste without needing to use a single enema or suppository! This is amazing after 20 years of misery. Although the endo wasn't on my bowel, it just goes to show how closely linked everything is. I know I had it 11 years ago when I had my last Laparoscopy, yet it was missed.

I’m likely to have the condition for many years to come. But now with an understanding of what’s wrong with me, the right diet and lifestyle, and the knowledge and care of medical professionals (who now know it isn’t all in my head)... I’m ready to do some living!

Keep going back to your GP if you aren't making progress. See a different doctor. And whatever happens, believe you will get through this when the right person takes you seriously. To think it can be missed is scary, but a second opinion could change your life!

Rosie X

[Thecraftyadder]

It took me 18 years. I was told it was bad luck and ibs to, and later a back problem. Mine was more the diarrhea end of the spectrum though! Like you I also had it missed on a previous laparoscopy. The relief of diagnosis was immense. The location of my endometriosis causes back issues and bowel irritation from the inflammation. It was the piece that made sense of the jigsaw! So I 100% echo the words of your post! 👏👏👏👏

[Gwen172]

I totally agree with you. Never give up!!! I have only last year discovered that even though I had a hysterectomy and was told that would be the end of my problem I still have stage 4 endometriosis. You never get rid of it. Also, due to having the hysterectomy at age 32 I was put straight on oestrogen which all it’s done has made the condition worse. Do these drs know what they are doing with endometriosis. I think not!!!! Am now on tibolone for 3 months trial. It has made a difference. Otherwise it would be excision which in the specialists word is brutal. I feel like I have been let down by my drs. My advice to you all is never give up. It is not in your head. No endometriosis is not life threatening but by god it is life changing. Good luck on your next chapter. Xx