4.6cm solid cyst - the dreaded 'It's probably IBS, you're fine'

Sigh. I posted this post a month or so back so this will provide some background:

http://www.medhelp.org/posts/Ovarian-Cysts/46cm-solid-cyst-inc-possible-clot---Help-to-understand-please/show/1885415#post_8773641

I saw a registrar gynae at my local hospital via the NHS. He seemed extremely dismissive because I am 21 and stated that 'it is most likely to be IBS' and gave me some medication with no explanation or anything. I feel as though I am now just another woman passed off as having IBS because doctors neglect the inconvenience that a cyst can cause. My cyst is pressing on my bladder to the extent i have to get up in the night 3 times to wee - I'm 21!

Has anyone experienced a dismissive doctor wanting to palm them off with IBS? I would just like to state that I am having a follow up ultrasound in 11 days however the gynae doc said not to return until June.

[Aquarielle]

Doctors are Notorious for blaming abdominal-- and yes, even pelvic-- pain on Irritable Bowel Syndrome.

     In my case, the dreaded words came again and again while I was seeking a diagnosis for digestive problems. I was told, "Oh, it's just IBS" by my Former primary care doctor, Former gastroenterologist, and an ER doctor-- and since I was about 10 years old. Finally, a diagnosis of Celiac was made through an upper endoscopy. Guess who else has it? Half of my father's family-- who had been hearing the dreaded "It's just IBS" for even more years than I had!! Thanks to my diagnosis, two relatives in their 50s and one in their 60s were finally freed from years and years of digestive problems. This sounds crazy, but we seriously all thought that our digestive problems and feeling especially bloated and sick after a dinner of pasta and bread was Normal... because it happened to All of us. I grew up with it. After my diagnosis, it suddenly all made perfect sense to everyone.  

     I also had to listen to it prior to being diagnosed with Lymphocytic Colitis, following a colonoscopy. That illness is usually found in 60-year-old (and older) men. But I was a 25-year-old woman at the time of diagnosis.

     I was diagnosed with Adenomyosis, a uterine condition, at 32-- and told by my Former gynecologist that it had started when I was 28, based on the MRI... and symptoms and signs she'd been dismissing for Five years. It usually shows up only on MRI and is usually misdiagnosed when it even shows up on ultrasound. But it's uncommon in women younger than their early 30s-40s. Of course it is.

(Just in case anyone happens upon this, reads the part of this post about Celiac, and suspects they have it, if you stop eating the foods which aggravate it, your blood tests and endoscopy biopsy results will likely come back as normal even if you have the disease, so don't do that until/unless the doctor says it's time to stop eating them. The diagnosis is important to make sure it is Celiac and not something else that needs treatment, and so your gastroenterologist knows if future tests need to be done in order to prevent/diagnose complications, such as rare cancers of the digestive system.)  

[katebrighteyes]

Thank you for your input - I have my follow up scan tomorrow and I hope they'll be able to enlighten me. I hate being dismissed when i am in such a lot of pain. But thank you for sharing this and for providing such a detailed account of your experience :)

[ticked]

umm I would get a second opinion as I do not believe this is IBS. That is just my experience when it comes to cysts, being young and being dismissed as IBS.

If you are not happy with the answers you have received I would see someone else. Someone that listens to you. Gave you had an ultraound before? Did they say how big the cyst was? Was there anything else noted?

I was passed off as having IBS for 17 yrs when in fact I had Stage IV Endometriosis.

[katebrighteyes]

Thank you for this response - I agree with you, it's wrong that age and these symptoms mean that people just dismiss me. I would like answers but they aren't very helpful. -- http://www.medhelp.org/posts/Ovarian-Cysts/46cm-solid-cyst-inc-possible-clot---Help-to-understand-please/show/1885415#post_8773641 -- This is the post from my original scan.

Just an update on this - I had that scan and it showed that the cyst had reduced by 1mm but the 'solid focal lesion' has grown by 2mm. It's not 6mm x 7mm x 6mm. So still not huge. However the cyst itself is still 4.6cm. There was approx 10mm of free fluid.

I had a bit of a problem with the hospital - i had my scan in March and they said my follow up appointment was June (!!! Damn NHS) and although I kicked up a fuss, my registrar said no to a sooner consultation. HOWEVER I called again today in pain and annoyed at the lack of help and they said my appointment was now April 8th - never told me it was changing but oh well, seems to be much better.

Nonetheless, Im in considerable pain and they are useless. They are dismissive due to my age but this 'solid focal lesion' is the biggest cause of worry I think - although small, the idea of it being a haemorrhagic cyst has faded as it has not disappeared.

What are the implications of a 'solid focal lesion'?

[ticked]

Okay so I am sure but not 100% that solid focal lesion is a Fibroid. Where is the solid focal lesion on the uterus? Where is the cyst on the ovary?

So what did they say about the 4.6 cm cyst? Did it say it was a complex cyst, Endometrioma, solid mass?

[katebrighteyes]

Hey

The solid focal lesion is in my ovary I believe. Or, in the cyst. I will type my latest results up for you later if I can find them. But it was initially described as a 'papillary projection' but next report a 'solid focal lesion'.

What's funny is the sonographer said she wouldn't even describe it as complex despite there being solid and fluid present. They just said it hadn't really changed, still there. They initially thought it was a haemorhaggic cyst with a retracting clot but three months passed and nothing. So they aren't sure now. But I haven't seen my doctor yet, my appointment is in just over a week.

[katebrighteyes]

As promised, here is my most recent ultrasound report:

Uterus anteverted and measures 62 x 35 x 46mm. It is normal in shape and echogenicity.

The endometrium is smooth and regular with an ET of 3.5mm. This is consistent with oral contraceptive use. No focal lesions seen.

The previously reported left ovarian cyst is identified again today measuring 45 x 29 x 40mm. The solid focal lesion measures 6 x 5 x 6mm and demonstrates posterior enhancement. There is no significant change in size or appearances from the previous scan. No vascularity identified. Otherwise normal appearances to the surrounded left ovarian tissue.

The right ovary measures 22x14x22m and appears normal.

THe are no adnexal masses seen, there is a trace of free fluid (10mm depth) anterior to the uterus.

[ticked]

What does your doctor say after this one?

[katebrighteyes]

Well I had alot of problems with making him see me. I called and they said we don't need to see you until June. But today I got a letter saying my appointment will be 8th April. I'm based in England and I use the NHS and it's frankly quite awful sometimes....

[katebrighteyes]

Just to let you know I've been referred for surgery now :(

[katebrighteyes]

My surgery is scheduled for 5th July...I'm nervous and just want it over with now!

[ticked]

That is great!! Let me  know how it goes :)