Endometrioma but without having endometriosis??

[Katon]

Hi, looking for a little advice . So....bit of a long story (so sorry). I am 41 years old and have had 4 c sections. I have been having much more heavier periods( but always been an issue ) since the birth of my little boy who is 2. So much so I am going very anaemic and totally wiped out each month. I am having pain, back ache, weight loss etc .

I was referred by my GP for a scan to see what's going on. Found a 5cm cyst Sep time and rescanned in December and still there .

I was referred to Gynaecology after my first scan as also have a bicornulate uterus , which I knew nothing about . I asked for the mirena coil to see if it helps with the heavy periods which the GP wanted a gynae to do.

Anyway after the second scan I was put on an urgent referral . Decided to use husbands work healthcare and went private . Saw the consultant who is removing the cyst and fitting the mirena on 21st Feb. He is also doing a biopsy and did CA125. He seems nice but quite quiet really and didn't really get a lost on information out of him 🙈.

I have since the app seen the ultrasound report and it says I have an Endometrioma. I haven't been told this or about having endometriosis or if this is something they are thinking off. The consultant said nothing at all! He had seen the report before me .

My CA125 has come back at 45 (not taking while on my period). His sec called me and said he wasn't worried and also anaemic (as usual even though on iron).

I have never, with all my sections, had anyone mention if Endometriosis was present or any scans while pregnant or in the last two.

I have read that you can't have Endometrioma without endo ! I'm very confused with all of this . Has anyone had anything similar at all? Thank you for any information or advice xx

[Scoutybob]

To my understanding an endometrioma is usually a sign of deep infiltrating endometriosis. I started having issues at a similar point to you. They mentioned an endometrioma on my first NHS scan but never said endometriosis. I had a 2nd private scan where they told me it was definitely endometriosis and then an MRI. My CA125 was also v similar to yours. I have deep infiltrating stage 4 endo, adenomyosis, kissing ovaries with endometriomas, a hydrosalpinx, tethering of organs and bowel involvement but I didn't have all of this show on the first scan. Did your consultant have an interest / specialism in endometriosis? It sounds lie you need further investigation.

[Katon in reply to Scoutybob]

Thank you so much for your message . I think he is more a fertility specialist tbh. He was the one AXA sent through. I think depending on what they find I will transfer to another . He hasn't even mentioned endo to me yet . I'll make sure I ask him before I go in for the op to check . X

[Zanlancaster]

I had an endometrioma on scsn and she said if you have one it is likely you have endometriosis. it spreads so best to understand it and it feeds off oestrogen and inflammation. I would recommend reading about it more.

[Katon in reply to Zanlancaster]

Yes. I'm definitely going to read up on it all prior to surgery so I can ask him the right questions before the op x

[Zanlancaster in reply to Katon]

might be of interest

Book

[RosieFalkor]

My story is very similar to yours - I had 2 C sections and after the 2nd one the pain started. My CA125 goes between 40 and 85. After many scans a “possible Endometrioma” was picked up. Please push for a laparoscopy or MRI. A Mirena will just mask symptoms. I don’t want to scare you but I thought they wouldn’t find anything on me since no one had seen anything on my C sections or gallbladder removal a few years ago. They found severe Endo (stage 4) which has spread everywhere including my bowel, bladder, abdominal wall and even my diaphragm.

[Katon in reply to RosieFalkor]

Thank you for your message . I'm having a laparoscopy on the 21st along with the removal of the cyst so hopefully if I get some answers then I'll transfer to an endo specialist . I almost want to ask him not to do the mirena if he finds endometriosis. Does it help or hinder endo ? Xx

[RosieFalkor in reply to Katon]

I think it sometimes helps. I haven’t found it very helpful though.

[Lindle]

Endometriomas are endo so it is a diagnosis. There are 3 types of endo - that which affects the abdominal lining (peritoneal), deep infiltrating and ovarian (endometriomas).

Basic scans will usually only show endometriomas as they are filled with old blood which shows easily. As has been said endometriomas are usually a sign of deep endo (rectovaginal) so a different type, but this requires advanced skills to find. Symptoms can often be an indication - eg lower back pain, leg pain (often but not always the left), pain with sex, bowel problems.

You really do need to identify now if you have deep endo as this would require treatment in a specialist endo centre. A lap is no longer the gold standard for diagnosis - you need an MRI before any surgery. Having private cover is often seen as an advantage but is not always the case with endo. In any event, private or NHS, you should only see a gynaecologist with a special interest in endo as a minimum and with private cover the opportunity is there to be seen by a proper endo specialist.

The problem is that if someone goes in and they find severe endo they can’t touch it, they would have to come out and refer you on to a centre so you would have had a diagnostic lap for no purpose. It’s really important that the appropriate work up takes place before any surgery.

[LME5 in reply to Lindle]

Anytime I come by one of your comments, they're always so informative Thank you for sharing x

[Katon]

sorry I missed your reply . So informative and thank you for the advice x