Very new and confused... : I have just... - Endometriosis UK

Endometriosis UK
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Very new and confused...


I have just spent the weekend in hospital having tests to see what is causing long list of pain and other symptoms. After having a normal ultrasound and a transvaginal ultrasound I was told that I have 3x endometrioma's on my left ovary. I was then told by the surgeon that I would have to wait 6 weeks to see a gynaecologist and check if they'd grown. They said I have endometriosis. Other than these things and to give me paracetamol the surgeon (general) could not give me any more info as he doesn't know much about the condition and to wait until my gynae appointment. I have since read the only way to diagnose endo is by laparoscopy. So now I'm confused... Do I have it or not? Can you tell without a laparoscopy?

9 Replies

I had an ultrasound after unexplained infertility and I was told after that I have a dark mass on my ovary which looked like endometriosis, but that I would need surgery to confirm it. I'm suprised that they were able to give such a definite diagnosis, but I guess if they were easy to see then they know what they are doing!

Good luck with the gyne appointment, and just make sure you are well informed about all of your options - I had no idea what I was dealing with at the beginning and I wish I had done a bit more research! x

If you have endometriomas then yes you do have endometriosis, but it doesn't reflect the scale of endo.

An endometrioma is a blood filled cyst that forms from an endometriosis lesion on the ovary. Having these types of cyst is no indication of the extent of the disease. Having 3 cysts on one ovary could mean three patches on that one ovary and nothing elsewhere. That would be the best case scenario, but I would be lying if I said that was very likely.

Much more likely is you do have lesions or patches of endo elsewhere in the tummy, perhaps on the neighbouring fallopian tube, or the bowel or bladder or appendix or any of the other neighbouring tissues.

Only surgery can see these patches when they don't have cysts on them.

During key hole surgery they will remove the endometriomas that they know about now and will look for other signs of endo in all the usual places it tends to appear.

They might have time in the op to laser the shallow lesions of endo or cut out the deeper endo, but there may be too much to fit in to the one appointment on the operating table and subsequent surgeries may be necessary to get at it all. The older you are the more endo you are likely to have elsewhere.

Endo cannot be seen on scans, but endometriomas can and are quite distinctive in appearance because they are filled with old dried up blood which has turned brown which is why they are alsp called chocolate cysts. If they have a mix of old blood and clear fluid they are called complex cysts. They are still endometriomas.

If you have endo on the ovary or ovaries and elsewhere, then these little lesions when they are not making cysts, cause scar tissue to grow as a method of your body trying to protect itself. This scar tissue is gluey and is called adhesions and sometimes(most of the time) they don't know when to stop growing especially if your endo is active every month with your period, and causes more irritations and thus more adhesions.

These gluey adhesions are as big a nuicance as endo, and they can glue endometriomas to other organs, your ovaries to other organs and other tissues and organs to neighbouring ones too. making it rather a stick mess inside you.

The surgery will allow the doc to cut these right back and free up organs that should not be stuck to each other in normal circumstances. however it is only a temporary fix and they always regrow. infact each surgery does encourage more of the wretched things to grow anyway. There are barriers that can be put in during the op to stop organs sticking to each other, but they don't stop the adhesions growing they just act as a buffer in the way.

After the op, the best way to stop endometriomas is to stop your periods from happening.

There are many ways to do this, usually the first to try is Birth control pills or menstrual control pills. Taken back to back to stop you having a period.

There are others like norethisterone and mirena coil etc.

Look in to all of these options, and I would thoroughly recommend the mirena especially because of the long lasting benefits of it, not having to take tablets every day, not having the costs of pain killers and tampons and towels etc. Mirena can stop your periods up to 5 years, but it does take about 5 months to get to work.

It is painful to get put in, and for that reason I would stronly suggest once you have done your research on it, that you ask the surgeon to insert the mirena during your operation, so you know nothing about it going in. By far this is the best way to get mirena insterted properly and with the least pain. Then give it a chance to get to work. It is liverating once it kicks in.

It can give you a higher chance of non-endometrioma cysts on ovaries, but for all the benefits to your quality of life this is a risk worth taking.

Having endometriomas removed doesn't stop them reforming again and doesn't stop other ovarian cysts from forming either. Once you have had cysts you are more likely to get more cysts sadly.

Hopefully getting them taken out will make you feel so much better.

I had an 8cm and a 6 cm endometrioma, one on each cyst. The 6cm one had grown around the ovary itself and it was decided to remove the ovary and the fallopian tube.

The other ovary was cleaned up of adhesions and endo and the endometrioma was removed. leaving me with one working ovary left.

The odds are that you will be having a laparoscopy (lap op/keyhole) in the very near future to get those cysts out, so don't delay in doing your homework on other things you can have done at the same time. Mirena Coil instertion is one of them, having a smear test is another if you have found smears too painful to have done for a while, if sex is painful then you could ask for adhesions around the cervix and vagina to be looked at and cut back to hopefully improve love life, if you are considering starting a family then you could have the fallopian tubes checked with dye pumped through them to see if they are clear tubes still and not blocked up.

I they are both blocked then its straight to IVF when it comes time to try and get pregnant.

Lots to think about and lots to read up about and prepare yourself for a chat with the gynaecologist surgeon as to what you want to do.

If you have completed your family then it might be a wise decision to forfeit the troublesome ovary along with the endometriomas, but if you have yet to have a baby and it is something you are planning on one day, then you would need to say that you want to surgeon to do all possible to save that ovary might not be possible but you can ask them to try.

I'm surprised they told you definitively that they were endometriomas too - I suppose they can be pretty sure what they're looking at when they're looking at them every day and they are very probably right, but as far as I am aware the only definitive diagnosis is via laparoscopy.

I reckon the surgeon is wanting you to wait 6 weeks to see if they grow significantly which would indicate how aggressive the endo is, and sometimes they just disappear by themselves anyway.

The main thing is not to panic. It is entirely possible that your fertility has been compromised by endo but it is equally possible that the endo has nothing to do with it - I had stage 4 endo but the ovary and tube I had left worked perfectly. An endo diagnosis isn't always the end of the world, and if you've not had significant problems with pain etc up to now it's quite possible that it won't cause you any trouble at all.

Good luck :)

C x

Thanks everyone. It was all a bit daunting to be told all of this when the surgeon/Dr is was being treated by had 5 minutes before discharging me . Should probably have said that I was originally admitted to a surgical emergency unit with suspected appendicitis on Friday morning and when they discovered it wasn't my appendix they decided it was probably gynaecological. They had to check out the appendix first even though most of the symptoms were gynae related. So the whole time I was under a general surgery team and never transferred to gynae.

*Impatient* thank you for all that info. I have been down some research as like I said they didn't tell me anything at the hospital but you have definitely given me more to think about. I am 29 btw and having been trying to conceive for a few years now.

You can have endo on the appendix.... and get that removed too if found.

So even if your cysts are over on the left and the pain was on the right hand side at where the appendix is, it could be endo on the appendix.

Not nearly as serious as appendicitis which is an infection, but can still be significantly troublesome pain wise from endo.

I was told by my doctor/specialist/surgeon that endo is not able to be diagnosed by anything but laproscopic surgery. That is confusing.

in reply to csimmons

10 weeks later I went for the appointment gynaecologist (endo and fertility specialist) said it was an endometrioma on my ovary and that he could tell by the scans. He then arranged for an MRI scan and scheduled me for surgery (which he said would be in 3 months unless the MRI showed anything else) the MRI was to show if there was any deep seated endo which showed there wasn't but that one of the endometrioma they had seen on the TV ultrasound had doubled in size. I then had the lap, hysteroscopy and dye test all together in December (2 months after seeing him) they got a bit of a shock as my bowel, uterus and ovary were stuck together (which they weren't expecting as the MRI was fine other than the endometrioma they had seen) and that I also had it on the ligaments and nerves so the lap they said would take an hour took 3 and the surgeon came round after and said that was a big surgery!


Endometriosis can show up with a scan but for the gynaecologist to get the full picture they will probably need to do a lap.

I had a scan 2 years ago and a small amount did show up on my womb however they didn't see the full severity if it until they did the lap - my tubes and ovaries were all stuck together and my bowel was covered as it had attached itself to the back of my womb.

Good luck there are more and more articles out now on endo so do a bit of research as i have been suffering since my late teens but was diagnosed with IBS for years as the symptoms can be similar it was until I was 40 that I was diagnosed correctly it was so severe the specialist did a paper on me as she'd never seen anything like it.

Hi, i had 4 laposcopes. I had on and off appendix pain over years and it wasn't until my appendix went that they found endo around my appendix which not been picked up in my other ops. That year ago and 4 weeks ago i was admitted into hospital with pain nearly as bad as my appendix, i was on morphine and they run tests and decided it prob return of endo. I got swollen groin, shotting pains down my right leg and in right side of my stomach. I was kicked out of hosp on 8 tramadol, paracetmol, ibprofen and busapan if pain more tum area. They refferred me to gynie only COs i demanded it. After not hearing anything o rang the gynie department to be told a mistake had been made and sent it to outpatients got a appointment for 10weeks later. GP been great but very little he can do and re applided for earlier appointment which i got on for 3 weeks time but in off work cos cant work with the pain. The hospital treated me awful and min they decide it not what think then it endosmosis and they cant be bothered. IM also having acupuncture and using tens machine to get on top of pain but still in limbo. Any ideas on pain relief? Thanks

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