First it was an ovarian cyst, now its IBS?!

Women's health
1

Hi all, hoping someone can help me!

A few years ago, I started having excruciating pain during my periods, sti test was negative, ultrasound showed nothing of concern. It lasted about a year and went away. 13 months ago I started getting the same trouble, again every test was negative, was told possible endometriosis and to monitor.

On dec 15th 2014, after my period I developed pain in my left abdomen, by my ovary. The pain got more severe, it felt like a knotting twisting pain, I had backache, hip pain, nausea, dizzyness and lightheaded ness. The pain kept increasing and I was referred to a ob/gyn and I paid privately to see him.

He examined me and told me he felt a cyst on my left ovary and my uterus was deviated to the right because of the cyst. I was referred for an urgent CA125 and ultrasound.

I had both, with the ultrasound being both internal and external. The results went back to my GP who told me that neither ovary could be seen.

During this time my pain had got a lot worse, it was very sudden and severe, making me feel like I was going to vomit or pass out, severe hip pain and all other previous symptoms. I also can't wear anything apart from leggings now, tight clothes cause the excruciating pain, as well as doing too much, ie I'm a hairdresser and after a few cuts I'm in agony, hence I'm not currently working for anyone and self employed to help this.

Today I had my appt with my ob/gyn. I felt that he couldn't give me any time. He wasn't interested in my symptoms or how severe the pain had become. He told me I have no gynae issue, after a very quick examination and have me IBS tablets? He had no reason as to where the supposed cyst has gone. I saw him on the NHS this time, instead of private and I feel that he was annoyed by that and gave me the tablets just to get me out of his hair as I can't afford to pay.

Has anyone been told they have a cyst before and then told actually they didn't and had IBS? I'm so confused!

2

Sounds a tad like me. I had a hysterectomy in May 2012 but kept my ovaries. about a yr after my op i kept getting pelvic pain like a period pain but also a stabbing pain on my right side. went to gp was told it was prob scar tissue did to much to soon after op. The pain subsided after a mnth or two unless i did to much. october 2014 it came back with vengance stabbing pains in my right side like a permanant stitch hurt down my leg in my groin and my hip would keep me awake as when i turned over lay flat it hurt. Sex to is painfull in the area where my ovary is. went from having the runs and then not going to the loo. Saw a diff gp who did an internal and said he could feel what was prob a cyst he did a ca125 test which was normal. arranged for an ultrasound scan and a gynea app. Scan came back inconclusive as she could not see my right ovary. Saw the gynea who said she could not feel anything like a cyst although i was a bit tender nearly jumped of the table during internal as it hurt so much. She then concluded that my problem is constipation told me to take laxatives and that should clear my problem. Well 4 months later and going to the loo easy and regular i still have the pain and feel generally unwell. Think i have now learnt to deal with it but i need to go back a see gp but feel i am just being a pain but i know something is not right 

Good luck i hope u get sorted x

3

vicki and cathy, for once i am lost for words.

i have empathy with everything you say.

last week had a uterine polyp removed and to be honest still got all my issues.

the gynnos did say my ovaries cant be seen on various tests

so that is usually a good thing.

then they said out of the blue that my ovaries are perfect.

i remember reading somewhere that one of the reasons they cant see your ovary, is that part of your intestine is in front of it.

do you feel any twitchness where your pain is.?

have your symptoms changed over the months?

tomorrow i go to see my gp to ask how long it takes to get post op appointment.

i know i'll get a shrug.dont know attitude.

years ago before any of us had internet, we thought the medical proffession were ever so clever.

sometimes i frighten myself reading about conditions i might have.

i have recently been thinking about pelvic congestion syndrome.

 varicous veins around the uterus.

or could it be a hernia.

cathy it might be a good idea to look for natural foods to help your bowels instead of relying on laxatives.

i buy salted pumpkin seeds from lidl or kiwis are good.

 

4

OMG.... i can't believe your story. PLEASE ASK FOR A SECOND CONSULTANTION WITH SOMEONE,

I went for years been told i had IBS and then i was rushed in emergency and ended up having my ovary removed due to a big dermoid cyst (dermoid cyst keep growing and contain hair,teeth,bones blood etc). 

I then felt better but started to gain more problems and i went back to gyne consultant who was totally horrible, like yourself gave me IBS tablets and things like that and it was horrible. I MADE A MASSIVE ARGUEMENT WITH MY DOC and eventually managed a referral to differen consultant and hospital. Anyway i have just come out of another surgery having cyst removed from my only ovary and bladder. lucky it hasnt cause any damage but i am so pleased i argued with my doctor.

As for the CA125 test, dont worry too much about them being high.. they can be high for a few reasons especially if you have andometrisis or endometriosis. It can also be related to cancer. If you have any endometrisos (sorry my spell rubbish tonight) ask the consultant to cut it out and not burn it as that will give you the longest and best relief and help to fertility.

I have over 8 friends WITH ALL stages of endo and they see an excellent specialist in UK in middlesbrough. Best within the North East england.

To be total honest with you... if i was you i would get another conultant and fight to be seen. Your sysmtoms are very much the same as mine... i suffered really bad with constipation and IBS issues before i had my first cyst and ovary removed in June 2013. I used to not been able to go to the loo for nearly a wk despite taking loads of laxative but soon as i had my operation my tummy issues helped massive.

IBS is related to endometeriosis and more... so yes you may have IBS but it might be because of issues with gyne problems. You can pay for ultrasound scan at some centres in the UK.... i would say if you can afford it pay for it and then you can always say look something isnt right. However you shouldnt have to pay for it you should demand your doctor to refer you to a different hosptal and gyne consultant. Sometimes you can change hospital trust and you can do this to make it happen so you dont go back to same hospital.

Its not right to be in pain and you have every right to get checked out. I knwo NHS is under pressure but you need looking at to gain some form of support to help you.

One last things... sorry for going on.. but have you ever had the merina coil. Or recently come of contraception. This can play a massive effect on hormones and cause issues. I came off the coil after 12 years in april 2013 and i hit a wall and then had ovary etc remove june 2013.. ... you can see where am going. Just it could be link if you have stopped or changed??

Hope all goes well would love to know how you get on.. x

5

Lol chica i actually work in lidl i have linseed on my muslie for breakfast every day so apart from the odd day when i struggle i am like clockwork. My pain hasnt changed much i have good days and days where i feel terrible. I know the pain is from my ovary. My manager in work said maybe i am ovulating even tho i had a hysterectomy so know keeping a note on my symptoms to see if there is a pattern. then i can go armed to the gp. 

6

Chica just to add i had fibroids grapefruit sized hence the hysterectomy. But before that i had the fibroids treated with embolization. Which was done on my right side beginning to wonder if this has any bearing on my pain there now rolleyes

7

i have been on a magical mystery tour in the last 3yrs 3 months thanks to my gp.

gyneacology dept several times, urology cos of difficulty peeing.

gastro dept cos of diahria., oh and internal medicine dept whatever that means.

right from the beginning i suspected lady problems but oh no.

have been tortured beyond belief through wide awake colonoscopy.

and i'm sure i've reached the stage i glow in the dark thanks to radiological tests.

i must say my gp is doing her best for me but i think theres a big lack of communication between the departments.

i am now 9 days post polypectomy.

my pain is still the same.

all testys come back clear except for multiple fibroids.

its not rocket science. i think i would benefit from a hysterectomy but no ones mentioned it.

i'm 67. i weigh 50 klos.

my tummy bubbles and gurgles.my pain feels like its in my left ovary but after meal it radiates to my stomach and  chest.

i have loose poo.

i get a wriggly sensation in my groin.

i cant help thinking they've missed something like a varicous vein in my uterus or a ingiunal hernia or even a cyst.

ifeel like banging their heads together i'm so frustrated.

i now await about 6 weeks for post op letter inviting me to see my polyp surgeon.

today i saw my gp and told her i felt exactly the same as before.

she said all was normaaaaal.

god give me strength.

 

8

Oh my goodness poor you. You have been through the mill. Personally i would ask to be reccomended for an hysterectomy at least then they can rule out any problems to do with the fibroids and anything they are coonected to. My fibroids caused well bad period pain and very heavy periods. Was given tablets to stop the bleeding for about a yr but the stopped working eventually. I was anemic to the point of having injections. was sent to a radiologist to have the uterine embolization but that did no good whatsoever just ended up in more pain more bleeding. gynea then wanted to try something else but i said no i am 50 i have 4 kids take it all away lol so they did apart from my ovaries. 

I do hope that you get to feel better soon and they get to decide what your problem is. Hearing stories like yours puts my bit of pain into perspective that there is always someone worse of than u. We all know our own body and know when something is wrong! Please take care. 

9

Thanks everyone for your replies!

I must admit I am slightly concerned, I received a letter from my consultant yesterday discharging me and advising me on my Bowel problems - even though I don't have any problems, well at least not that I was aware of! I have always been regular and like clockwork, he thinks I'm constipated! I am taking a lot of cocodamol so if I was constipated I would of blamed that first, but I have no problems in that area at all!

I have been taking my cooler in tablets that he have me for the ibs for 5 days now, so far the pain is still the same. I will be asking for a second opinion I just don't know if my GP will overrule him.

Also he told me to take my pill consistently without a break until I am ready to conceive, that way I will not have the sharp pains I get during my period. Does anyone have any experience with that? To me it doesn't seem natural, and more to the point the pain I get is 10 on the pain scale and he isn't bothered into finding out why!

Hope you ladies get sorted soon, it's awful being in constant pain!

10

its worrying that we cant trust any of these doctors.

i am becoming paranoid.

i've had chronic pelvic pain for over 3 years and find so many inconsistencies with the tests i've had.

ie.after xmas had CT scan but my appointment for results isnt until the end of june.

i asked my gp yesterday if any results had come up on her screen and she told me the test had shown no problems.

thats strange as i also had same test back in 2012.

this showed multiple fibroids which i know are still there and swellings in my stomach and bowel.

last week i had a uterine polyp removed. still got the same pain. last year

tried to go private but got fleeced for 1000 euros and no diagnosis.

cant win !

all these experiences and more have made me totally negative person.

dont like who i have become.