Not Endometriosis, so what is it!?

[StartingAgainat31]

Sorry for the detail ladies!

Who has endometriosis, and not have it picked up on the first laproscopy? Or have the below symptoms and have a successful diagnosis with anything else?

I fit all of the symptoms of endometriosis. Spotting for days before and after periods. Passing clots between periods. Periods lasting 7-9 days. Breaks in periods, so will bleed heavily for a few days. Stop for a few days, and then bleed heavily again for a few days. Heavy periods, to the point where I can be changing a cup every hour or so because its full. Very irregular cycles, varying from 18 days to 30 days. Pain throughout the month. Painful periods. Pain during and after sex (although its been so long i struggle to remember 🤣). Painful when going to the loo during my period. Bleeding from vagina when going to the loo. Cystitis symptoms around my period.

I've had numerous tests done to check hormones, STIs etc etc.all come back normal to my knowledge.

However after waiting a year for a laproscopy, and going back and forth to my GP for 16 years with period issues, I got told there was nothing wrong, and that if I had any more pain to go back to my GP. As I have pain most of the month that seemed pretty ridiculous. No effort to find out what the issues are.

A cyst was found on my overy at a scan back in March, which I felt explained a lot of my pain on that side. When I mentioned it to the surgeon, who seemed to have no knowledge of my case before walking into the room, she dismissed it as too small to be concerned about, despite me saying I believed it caused me pain.

And it rules my life. I spend 14 days of a cycle bleeding. My iron levels are at rock bottom so I feel like crap all the time, dizzy, lacking in energy - all the things you don't need as a single parent to a toddler.

Has anyone got these sort of symptoms and.been diagnosed with something else, or do I have to accept this is normal and just put up with it!?

I'm 31, so I'm not ready for anything too drastic yet, but at the same time I really wonder what my options are.

It does look like something fundamental here has been missed in a laparoscopy and given your symptoms I would think that endo is a possible cause (deep pain during sex can also be symptomatic of endometriosis).

Did they not properly explain the nature/type of the ovarian cyst either?.

Do not be fobbed off with poor treatment. I would go back to the GP and insist that you are referred to a BSGE accredited centre.

www.bsge.org.uk/centre/

www.endometriosis-uk.org is also a good website

You will need to be persistent in order to get answers.

Whatever you do, you do not have to put up with this nor should you have to put up with this. What you are describing here is not "normal" for periods at all. Periods should not be as you describe at all. Your symptoms are highly suggestive of endometriosis. Hormonal tests are next to useless when it comes to endo and no blood test or internal ultrasound scan (I have had more of those than I care to mention) ever detected the endo that was present throughout my uterine cavity.

@AttilaTheMeerkat. No explanation whatsoever. I was in recovery. The surgeon said good news, no endometriosis, any more pain, see your GP. That was it. I was barely awake, so really not with it enough to ask questions. No reference at all was made to the cyst, whether they did anything with it, or even looked at it, or not. I had to go through everything with her before my surgery, as she clearly had none of my notes. It was a bit of a concern when they asked ME wht they were doing what they were doing.

OP,

I was recently diagnosed with stage 1A ovarian cancer and my Ca125 results were all at the low end of normal and having now joined 2 OC forums it’s sadly very obvious that the CA125 test frequently gives false negatives as a result even when cancer is quite advanced. Not that I’m suggesting you have cancer. Just pls don’t delay getting to the bottom of your health concerns based on your blood test results.

I’ve just been through hell on earth after being lulled into a false sense of well being based on my test results and I don’t even require treatment apart from the debulking surgery I had that left me filleted and gutted like a fish. I’m one of the only 15 per cent of women who have a stage 1 diagnosis and though I’ll have check ups for 5 years my chances of a reoccurrence are very very low.

The bottom line is that the only way to be absolutely sure a person doesn’t have OC is for it to be looked at under a microscope.

If you like I can direct you to the forums I’ve joined so you can ask about the CA125 yourself.

Sorry wrong thread

Hi. I was diagnosed with adenomyosis as I also had an ovarian cyst. Similar symptoms to endometriosis. Due to the cyst and suspected ovarian cancer I saw a consultant privately. I had already had a hysteroscopy and biopsy with the NHS and not been diagnosed. My consultant said that it can only be fully diagnosed with an MRI. Either push for an MRI or if you can afford it you can get this done privately. The solution for me was the mirena coil which has changed my life but if it hadn’t I would then have had ablation.

I would complain to PALS particularly if you were talked to about the lap findings whilst in the recovery room. This is poor practice on the part of the hospital. Ideally a person should be given a follow up appointment a week or two post surgery to discuss the findings.

Sounds very similiar to my symptoms caused by fibroids but if you've had an ultrasound scan that should have picked those up.

Similar to my symptoms and inhave fibroids and severe anemia. Anemia can increase your bleeding. Have you had an ultrasound? Absolutely do not dob this off as it’s debilitating.

This is so common for endo sufferers, usually for one of two reasons: the endo is microscopic and is found years later when there are more deposits, or it’s adenomyosis which can’t be diagnosed except after the uterus has been removed.

I’m so sorry you’re in pain. If you’re not already under their care then ask for a referral to a pain specialist.

Hello :) I'm really sorry you are experiencing this! It may be Adenomyosis ( where the inner lining of the uterus breaks through the muscle wall of the uterus, causing an enlarged uterus wall. It causes very similar symptoms. Unfortunatley the only true remedy is a hysterectomy.

I just had an ovarian cyst removed via laprascopy and the doctor had before been convinced I had endometriosis. However she said there was no endometriosis but I do have adenomyosis. However since the cyst removed all of the pain has went and I actually ended up pregnant a few weeks after the surgery!

Hope youre feeling better soon. I found the only way for the GPs to take me seriously is to play up my symptoms. With my first (suspected cancerous) ovarian cyst, the GP's just expected me to wait for 9 months in agony and kept acting like I was a hypocondriacte. I went to A&E and it turned out the 4cm cyst which was 'nothing to worry about' was a 13cm cyst which required an emergency open surgery!