To ask those who have endometriosis

[ilikebeckerinmyoldage]

What your symptoms are like, or if you possibly don't even have symptoms?

I'm so confused by it. Been ttc for five years with no reason for infertility. I've had MRI's which don't show endo.

However my specialist is saying let's do a laparoscopy to make sure I don't have endometriosis. She asked if I get painful periods. I mean, they kind of are but aren't periods in general kind of crappy feeling?

I'm weighing up the pros and cons. Is it possible I have it with little to no symptoms?!

My endometriosis causes excruciating pain daily. It’s better sometimes depending where in my cycle I am but it’s always there. My periods are horribly heavy and last 7-14 days where I soak through a tampon and pad in less than an hour. Then I also get horrific pain when I ovulate as well. My blood pressure drops due to it and I faint regularly. It’s crap basically. Sometimes I fill a hot water bottle with boiling water and burn my skin as that pain distracts me slightly from the endo pain and I can deal with that one better.

Before surgery I had constant pelvic pain that got worse during my periods. It also affected my bladder and bowels. Sex was painful, I would sometimes bleed after sex. After surgery my symptoms have improved greatly.

However it is absolutely possible to have with little to no symptoms. I would absolutely have the laparoscopy, even if they don't find any at least they can rule it out

Some people don't have symptoms, it depends on where the endo is located rather than how severe it is. The only way to confirm a diagnosis is through a laparoscopy unfortunately. It's day surgery but you will hopefully have an answer at the end.

I'm in pain every day, and my periods are crippling. I have pain after sex, I get bad bloating, I'm exhausted all the time as the pain interferes with sleep. My pain is quite widespread, and doesn't react to painkillers. But just because you don't fit the symptom profile doesn't mean you are free of it, especially after five years of TTC. Good luck!

There are stages to the disease 1-4. 4 being the most severe.

Someone women don’t have chronic pain. Some have daily pain. From mild to chronic.

Mine is daily, unfortunately!

My hair has fallen out.

I get migraines and chronic leg and shoulder pain.

During a period I vomit pretty much for five days straight.

I’ve had 12 surgeries so far. Not one of them has gone to plan and not one has ever been less than 4-5 hours.

Be sure to speak to a specialist because endometriosis can and does grow everywhere. Lots of people think a hysterectomy is a cure for example, and this isn’t true.

You could have adenomyosis which is more affected by your period and cycle.

DD had

1. Excruciating pain on ovulation
2. Excruciating period pain - she had to crawl around the house, as she could not stand up never mind walk
3. A stabbing pain in one spot on her lower right side
4. Non stop vomiting at the beginning of a period
5. Frequent urination
6. Chronic fatigue
7. Pain on sex to bring tears to her eyes

And after a couple of years of it:

1. Loss of appetite
2. Nausea
3. Vomiting particularly as she got hungry

However the consultant gynaecologist told her some people have all the symptoms with Stage 1 or 2 endometriosis, while he has sterilised women with 4 children and Stage 4 endometrosis, with no symptoms!

Yes the chronic fatigue is crippling!

It really is very complex! I don’t say all of this to scare you but just to say that just because you don’t have symptoms ABC doesn’t mean you don’t have endo!

I had stage 3 endo according to the surgeon after my lap; I had the odd nasty cramp while I was on my period but nothing incredibly painful. They did the laparoscopy after I had an ectopic in the middle of us getting fertility tests, and removed it all while they were in there. This did the trick for me and DC was conceived 3 months after the surgery.

At first my symptoms were excruciating periods where I'd be absolutely doubled over in pain or on occasion absolutely writhing in bed, not able to function. As the endo advanced, I had constant pain on one side of my lower abdomen which was worse when I moved about. The laparoscopy showed I had endo pots on my right ovary and they were basically sticking to my internal organs and then getting pulled off when I moved and sticking to something new.

I have terribly painful, extremely heavy periods. Awful pain where I literally can't get out of bed, or just sitting down on a chair feels like something is stabbing me up the bum/vagina. I have pretty constant pain on my lower left hand side. Diarrhoea and painful bowel movements on the run up to and during period. Really awful shooting pains down my legs and through my lower back. I've had periods that have lasted 10 weeks before now. Usually anywhere between a week and two weeks, but very very heavy throughout.

Okay well this has been an eye opener. I get cramping with my periods. They are very heavy, but that has varied over the years. For a number of years they were light.

I also get migraines and significant hair loss. I hadn't connected it at all. It may still not be connected but it's something to think about.

I also have a lot of trouble with bowel movements during my period.

Thank you all for sharing, and I'm so sorry it's caused you so much pain and trouble.

Good luck, OP.

I don’t know about the UK but where I am it takes an average of 9 years to get a proper diagnosis!

Hi ilikebeckerinmyoldage
Wait till you get your laparoscopy before you know more.
With mine, it was constant pain, walking through the night with a tens machine strapped to the front of me and a hot water bottle to the back. Eating pain killers.
Periods for 18+ days.
In the end I had to have a hysterectomy which ended up also removing my appendix and a partial bowel resection as the endo had spread everywhere.

But... I did have a child after trying for 5 years previous to it getting this bad so there is always hope.
Tazzy.