I think I have endo but..

[cc93]

im 25 and recovering from an laparoscopy because I had a 36x30x12cm ovarian cyst and ovary removed I got my results they said it was borderline I said to my gyna I think I have all the symptoms of endo he shut me down straight away and said he didn't see endo my ca125 test was abnormal I have to go to my gyna once a year now and was told to keep an eye on cancer symptoms like loss of appetite ect I don't know what to do now all my symptoms are endo

[Riajane]

Oh my gosh, you poor thing. That sounds tremendously painful. As for the borderline, what were they talking about? I've never heard of endo being mentioned as borderline before at all. The fact that he shut you down and didn't listen tells me that he doesn't know much about endo. Don't let them push you away, you know your body. Go with your gut. You have a right to get the best care. Go for a 2nd opinion, go back to this gyne if needs be.

If you have any questions ask away. Read my past posts to get an idea if I can help you in any way.

Stay strong.

Ria

[cc93 in reply to Riajane]

They haven't said I have endo I just in the pit of my stomach think I have I have all the symptoms have done for years I ask about it and get shut down which didn't make me feel brilliant he just said the cyst was borderline and have to go yearly for check ups and do I contact the hospital for a second opinion will they have to do surgery again? Thank you for replying!

[Riajane in reply to cc93]

I would go back to your GP and ask them to refer you to a different gyne. They might also be able to tell you more information about your operation. What confuses me is what borderline cyst means.

The last surgery I had was in 2016, and it's only in the past few months that my GP said that the cyst I had was twisted around my fallopian tube!

This information wasn't given to me by the gyne that operated on me!! I remember feeling very overwhelmed after the op and in the follow-up appointment, I had questions but they weren't really answered.

Make sure you ask questions, write them down if needs be and the answers too. It's your body that's in question here and both you and whatever health professional your dealing with want the best for it.

What endo symptoms do you suffer with?

Ria x

[cc93 in reply to Riajane]

He just said it's not benign and it's not cancer surely they could of looked more into it and found out what it was? I dont know just feel like it was all for nothing and for years lower back pain painful periods not constant pain in pelvic area but shooting pains, intercourse pain and I have diarrhoea alot I always used to put it down to not being healthy it's been 4 weeks since surgery I'm sure my stomach is bloating again going to try see my doctor tomorrow they took my left ovary and tube because they was shattered

X

[Riajane in reply to cc93]

It would be a good idea to start a diary of pains, headaches, shooting pains, pain during sex etc so that when you.see your gyne you can present it to them. You'll also see if there is a pattern to the pains. Sometimes I would have terrible migraine but then the period itself was ok other times u would have horrific period pains, pain when sitting and going to the toilet. I also had heavy periods that would last 7 or more days. It was a miracle when I found the moon cup and I wished I'd know about it years before too. I've had the novasure procedure now so haven blead since Jan 2016 (but I still have a cycle)

Wishing you the best. Keep your chin up chick.

Ria x

[StefaniaJW]

1) CA125 isn't a good endometriosis marker

2) "I said to my gyna I think I have all the symptoms of endo he shut me down straight away and said he didn't see endo" hold on a minute, who performed surgery on you to remove this cyst + ovary? Your regular gynae who then shut you down?

3) 36x30x12cm. Are you sure it's cm and not mm? I've never heard of an endo cyst this big, no wonder they had to remove your ovary (even though a friend of mine had a 10-cm and didn't get her ovary removed at all. But she got surgery in the best endo center in my country, so yeah...)

[cc93 in reply to StefaniaJW]

No was definitely 36x30x12 cm they said it's rare especially for my age they have said I have endo I was shut down even mentioning it felt helpless they said my cyst was borderline I dont know what to do or how to be taken seriously and yes he was just a regular gyna not endo specialist thank you for replying!

[cc93 in reply to cc93]

I mean they haven't said I have endo!!!

[StefaniaJW in reply to cc93]

No wonder he didn't see any endometriosis, it was a regular gynaecologist. I am very very sorry you had to go through surgery like that but unfortunately endo surgeries HAVE TO be performed by an endo specialist if you want them to be able to tell you if there is or isn't any endometriosis, effectively excise it and remove it completely. You are the fourth woman this week I find myself telling this: surgeries with non-endo specialists are absolutely pointless because they cannot recognise endo (I mean, a 12-cm chocolate cysts IS SO DIFFERENT from an ovarian water cyst, he should have been able to you if it was endo or not!!), they are not very good at excising, they often end up removing your ovary (like they did) and not try and save at least part of it and just make you go through that with no final answer.

I suggest you get your documentation from surgery and seek an experienced endo surgeon ASAP. Unfortunately your current gyae will not be able to help you any further.

[cc93 in reply to StefaniaJW]

I wish I posted on this before maybe then I would of known to ask about endo gynecologist and I will definitely ask for my records am I aloud them? How do I find a endo gynecologist thank you so much for this it's a lonely feeling all this!

[StefaniaJW in reply to cc93]

You can either go on the Nancy Nook group on Facebook, download the Surgeons International file and search for one on there (but that file doesn't contain all surgeons though) or ask on this forum for a good one in your area that might not be on the list. Some work with the NHS some privately, some both.

There are countless women who get surgery with non-endo specialists and end up with no definitive answer or don't get their endo removed or even lose an ovary like you!

[BrightLights88 in reply to cc93]

Hi, I am sorry for the experience you have had. If it's not too late, you can go on he BSGE website and enter your location and it will give you all the local endometriosis centre hospitals. Good Luck. x

[cc93 in reply to BrightLights88]

Thank you so much I will do that!! X

[Hidden in reply to cc93]

Hi, where abouts are you in the country x

[cc93 in reply to Hidden]

Lincolnshire I've just checked BSGE theres nothing near my area x

[BrightLights88 in reply to cc93]

Oh no I just checked for you. Try the next nearest town. I know I have come across people on here who have mentioned that they travelled out as their area did not cover endometriosis centre. But you are in need of a specialist from a endo centre to check and give you a proper diagnosis. I am so glad I did not let my general gynae hospital take my ovaries out. It was like they didnt have any other options. Keep trying even if it's a town slightly a few miles.x

[Hannah0091]

Hey I’m with Riajane on this one. Iv never heard of it being border line! This sounds like a lot to deal with i hope your alright! I got tested for bowl cancer a few years ago as they were absolutely convinced that’s what I had and it’s painful (mentally) I would keep pushing ask for your medical records and ensure you get proper info it all sounds like they are very unsure x

[cc93 in reply to Hannah0091]

He never mentioned endometriosis I brought it up at my results appointment I said I think or thought I had it because had the symptoms since I was young he shut me down and said he didn't see anything and ended it there they just said cyst was borderline that is all i know I'm gutted i will push for further information thank you!

[Hannah0091 in reply to cc93]

It’s so sad and frustrating. But maybe he doesn’t know enough about it. It took me 5 years for a proper diagnosis and i raised it with my doctor 3 times in a plea for a referral. In the endo I chose to go private because I couldn’t fight them anymore. And got a full diagnosis of endo & PCOS & large adhesions. So don’t give up x

[cc93 in reply to Hannah0091]

Wow that is a long time! I wish I could go private my gynecologist wants to do my smear in June because it was extremely painful at the gps so will see how that goes I wont give up! X

[cc93 in reply to Hannah0091]

Do you have endometriosis did they mistake it for bowel cancer?

[Hannah0091 in reply to cc93]

Yeh. I know the feeling I’m doing psycho sexual therapy. They thought I had chrones disease at one point then tested me for bowel cancer which was negative then ibs then put it down to adhesions but no proper solution for adhesions.It was all just so bad and left me mentally depleted it just went on and on. & honestly I listen to my body over them now as I’ve lost hope with them. So I just go get what I need and usually communicate with my GP via showing her things I have written down I find it easier to communicate and I get less anxious & the go seams to respond better to my notes also nothing is forgotten I know it sounds a bit odd but works for me X

[Peebles2sarah]

Just looking for some more info. Why did they remove the ovary? And what results did you get? A biopsy?

[cc93 in reply to Peebles2sarah]

Ovary and tube was to badly destroyed from the size of the cyst went to get my results they said the biopsy results showed borderline

[Peebles2sarah in reply to cc93]

Okay I had the same thing with my ovary and tube! It’s too bad. I had a surgeon originally tell me that there was no endo at all but my fam doctor was skeptical so sent me to someone else and they found I had it. I think some surgeons are inexperienced and do not know how to recognize it well. Don’t give up! If they say it’s not endo, they have to figure out what else it is and they still need to treat it. They can’t leave you in agony! Fight hard girl! Good luck

[cc93 in reply to Peebles2sarah]

Will I have to have surgery again to find out if I have endometriosis? I found it strange how quick he shut me down they basically took me in a room checked my wounds and said it came back as borderline and he wants to do my smear in June because went to have it done with my gp and the pain was awful and that was before surgery I was screaming and I have a high pain threshold so he said he will do it I'm dreading it I will fight to get to the bottom of this feel like I've been put on a pile thank you for your help!

[Peebles2sarah in reply to cc93]

Take some pain meds before and fight through it I had the same experience with my pap as well but all negative. You will need to have surgery again to CONFIRM endo but not necessarily to treat it.

Brief summary of what happened with me: gyno went in for surgery and said that he found ‘no endo’ but lots of scar tissue between organs. He said that it must have been caused by an infection (upon research endo causes tons of scar tissue as well so this was bs). I didn’t believe it as I’ve always had clear paps and never been treated for pelvic infection so I went to my fam doctor. My fam doctor agreed with me and started me on visanne to treat endo. When this started to help, it was essentially confirmed that I had endo and I was booked in for a second surgery. It was a long and unnecessary process but it got me answers so I’m atleast grateful for that.

You may be lucky and the treatment may be enough to help with your pain. For me, because the adhesions have stuck my ovary into my pelvic wall, the only way to help that pain is surgery. Visanne helped me significantly though with uterus, bladder and bowel pain.

I’m sorry you’re experiencing this. I know exactly how it feels to be shut down and rushed along because a gyno doesn’t have the knowledge or experience. Just keep fighting!!

[T0rr1dredcharger]

I would get a new Gyno straight away.

[cc93]

Hi everyone my biopsy results was mucinous borderline stage c1c I'm recovered from surgery now all my symptoms from before are back my gynecologist wont do anything he said keep a diary that's all thigh cramps are getting worse I don't know what to do anymore just feel alone now I dont know how you ladies cope!

[StefaniaJW]

CHANGE GYNAECOLOGIST. An experienced endometriosis excision surgeon should have removed that cyst. I'm sorry but clearly you need an expert and not just any random surgeon because if you have endo, he/she will be the only one TRULY able to help and perform surgery will and if it won't be endo at least you'll know for certain and you will know you will have had surgery performed by someone who has seen it all.

[cc93]

I'm gutted I didnt know any of this before the cyst was removed how do I change gynecologist? I looked on the internet and apparently mucinous borderline can be from endometriosis he said he was just something that happened when I asked why it happened thank you for replying

[cc93]

I have just got back from seeing my gynecologist he said the symptoms will be from surgery even though I explained I had them before surgery he said recovery is 6 weeks I had surgery on March 18th I dont know how to be referred because my gp is as bad and it's really had to get seen at the gps these days if pain still same in 6 weeks he might, might get me in for a scan we will see..