Endometrioma - any positive stories?

[starkadder]

Hi everyone. I've just come back from a hospital appt where they told me that I have an 8 cm endometrioma. They'll remove it via laparascopy. The gynae said that this means I have endometriosis. I haven't had any of the other symptoms of endometriosis, apart from irregular periods.

I have had 3 MCs and one healthy baby. The last MC (the first 2 were before DS) was further complicated by the fact that I had a 10 cm cyst on my right ovary - the same ovary as this new endometrioma (cyst) is on. It might well be the same cyst. Apparently the cyst was nothing to do with the MC.

Anyway, the gynae has just told me that they're going to remove the cyst via laparascopy but he also scared me by saying (a) because it's 8cm, he might have to remove the whole ovary and (b) it is likely that I have endometriosis and will therefore have trouble conceiving again. Combined with my history of 3 MCs, I'm feeling pretty depressed about the prospect of ever having another baby. I know I am so so lucky to have DS but...I would so love another baby...

Has anyone got any positive stories about having cysts of that size removed without losing the ovary? Or of having endometriosis and/or only one ovary but still getting successfully pregnant? I think I need a bit of cheering up.

Awww Starkadder that really sucks.

I had endometriosis before I had any children. I had a laparoscopy as they were looking for PCOS but they found I had endo instead. I had the laser surgery and about 4 months later I conceived DS naturally after being told it was unlikely we would ever conceive naturally. DH had problems too and coupled with mine, we were told that IVF was our only option. We found out I was pregnant 3 weeks before we were due to start the IVF.

So yes, you can still get pregnant after having endo. I think the stats are about a third of women with it, won't conceive, but 2 thirds will. Plus you have already been pregnant. Don't know about it affecting MC tbh but that fact that you have actually conceived a number of times, IMHO means that you may be ok. Don't want to give you false hope but that is my experience and how I see it. I think the problems mainly lie with conceiving in the first place. HTH

Thanks coldhands was your endometriosis on your ovaries/fallopian tubes though? Rather a personal question to ask.. Ignore if you like!

anyone else??? make me feel better! Am rather tearful

I am happy to answer. It was on my pelvis, so different from you I'm afraid. Saying that, I am getting a lot of random pains and I always put it down to IBS but I have been on some other forums on here and some have mentioned about endo being other places from where the surgeons found it as well. I am wondering if it has come back.

The thing is, the surgeon has told you you may have trouble conceiving again. The endo may have been there for a long time. Some women don't know they have it (I had no idea) so you may have had it for years whilst you conceived before. You can never be sure. I hope this is the case for you anyway. There are other people with endo on the health forum, I was on some the other day. I have no idea how to do a link though.

Starkadder - youve got me thinking now.

I had a mc a few years ago, left it a few years then caught pgn - had bloodloss at 6/7 weeks and lots of scans thereafter, also had SPD or so they said. Had a good birth and decided due to age our family was complete

Always had fairly normal periods, not particularly heavy, no clots, no real pain.

Last year had extremely painful periods every other month to the point was nearly passing out. To cut a long story short and after a scan was told I had endo on my right ovary Im sure they said 3mm, a small cyst on my left and a 4mm fibriod. Had a lapo and they lasered the endo away, surgeon said after that the cyst had gone and had left the fibriod as not a problem and was very small. That was 3 months ago - this week I had horific pains again the day after my period - Im gutted as IVe been fine last 3 months but the pain was really, really bad.

I just cant believe that 3mm causes so much pain? Im goign to wait another month and see what's what Im really scared as I have a feeling it could be something else.

With regards to ttc - youve proved that you cna get pregnant...I think its a different kettle of fish - my mc hit me very badly, I was delighted when I got preg again but the bleed frightened me to dead and I said I wouldnt put myself through it in case it happened again.

It's good ... if it makes sense to say this ... that its not just me going through this, you always feel as though its you and you only as I dont know anyone aroudn me that has this and Im sure they think Im being a wimp!

HI Dietqueen - thanks for your reply I had a look at the UK endometriosis society and it says there that even a little but can cause a lot of pain so it might be that - maybe better to be reassured than terrified of the unknown?

Am sure you are not being a wimp

little bit. not but. A little butt would probably be quite nice...

Yes I had this - a 5cm cyst on my right ovary that was found to be an endometrioma once I went in for the lap procedure. They also found another bit that was removed from a ligament. They managed to save the ovary, though it is a bit misshapen now. I was told if I wanted to have children, I should conceive within 6-9 months of the operation or risk the condition coming back, so we started ttc after about 2 months of waiting for me to recover properly. I got pregnant on the 4th month of trying and DS is now 6 months old, and I discovered during an early scan, that it was indeed the right ovary that had produced the egg so it obviously works!!

It is hard to know before hand if the ovary needs to be removed, but they can actually remove quite a lot of it, and it still works (miracle of modern medicine!) and even if it is removed you will be told by almost all fertility experts that you only need one working ovary so all is not lost.

Another thing I would add is that although it is keyhole surgery it is still going to knock you about a bit, so be prepared for 2 weeks of rest while you recover. I was told it is 'major surgery through minor holes' so that is a good way to think of it. I was back to normal after 2 weeks however, but just a bit surprised at the pain as I did not expect it.

Hope this helps!

hi starkadder,

sorry to hear what you've been going through.

I had a large cyst on my right ovary in 1993 which was removed without affecting the ovary itself. At the time it wasn't linked to endometriosis - that was only diagnosed when my chronic pain started in 1994. I've had permanenent pain ever since (apart from the pregnancies and bf'ing). However, the good news is that I conceived extremely easily both times - in fact in my first cycle. The only problem was that the placenta refused to come after the first birth and had to be manually removed, my gyno thought it might have got stuck in some growths.

I remember specifically for my third laparoscopy asking the surgeon to check whether my fallopian tubes were still free. They can stick a dye through them or something. He did, and confirmed they were.

The fact that you've had one successful pregnancy means it's entirely possible for another. Don't lose hope, although I feel for you suffering 3 MCs. This might sound a bit esoteric, but I've heard that acupuncture has very good success rates for conception among endo sufferers. Now I have no idea how this might work - I can understand acupuncture combating pain with neural pathways etc, but how it helps with conception is a mystery indeed. I went to a seminar once at an endo conference with some impressive-sounding statistics for acupuncture success. I'm sure the endometriosis society has more info.

Thank you both, very much, littlelentil and blauerengel. I am feeling much more positive today and your stories really help.

I have never had acupuncture but I definitely agree that even though we might not understand how it works, that doesn't mean it doesn't work.

littlelentil - thanks also for the warning about the op. I only took one day off (the day of the op) for each of my MCs (had a D&C each time). Probably so I didn't think about it all too much. It was all a bit exhausting though. The op for the cyst is supposed to be within the next month but due to all sorts of other stuff going on I don't know how much time I can take off. But I will try to make some space, somehow...can't wait to get rid of this stupid cyst, actually. I am beginning to feel quite angry with it...

PS coldhands only just saw your 2nd reply!! thanks the surgeon did say that...but he only said it sort of in general - he wasn't v specific about me and I was too pathetic to ask properly - I tried but he got quite impatient. I live in Spain, and the doctors don't have a lot of time for explaining stuff here. I need to come home to the UK...

I have also had lazer treatment to treat endometriosis via a laporoscopy. I recovered really quickly - I even went to a family wedding the next day!

My consultant said that I had an extensive amount of endometriosis, but I have had 2 DS's, one before the laporoscopy and one after.

Maybe I am just lucky, it depends on where the endo is, but please do not worry too much.

Frankie I cant believe how quick you recovered!!! I was bed bound for a week then another week off work to get 100%.

The first week was recoverying from the pain from the gas they pump you with my shoulders felt like they were going to explode!!!

Im going to give it one more month and see what's what.

The endo website is brilliant Im also going to join their forum

Good luck everyone esp starkadder - sending you lots of luck

I guess I wasn't really that well recovered, but still managed to go the wedding - I was probably on adreneline! I didn't have any pain from the gas.

Just got back from consultant as my terrible periods have come back - I am going to have a pelvic scan next week to look for fibroids, not sure if the scan can see the endometriosis or if I will need another laparoscopy.

thank you SO much for your replies! especially madgebettany - that makes sense to me. I actually first got my cyst when pregnant (MC at 8 weeks9. It was 10 cm and when they did the D&C they said, "oh, don't worry, it will go away by itself". At least, I think that's what they said (Spanish not too hot). Anyway, that was in August, I started feeling it again in about October and eventually picked up the courage to have something done - they measured it in early Dec and it was 7cm, and now yesterday 8cm. Although that said, I am not sure how accurate these measurements are as the 10cm was measured by different gynaecologists over the course of a few days (long story) as 10cm, 9cm and 8cm.

ANYWAY here's hoping it isn't chronic endometriosis and that even if it is, it isn't too bad and I WILL be able to have another baby

Frankie - yes they can see the endo from a scan I had an internal one that is far more sensitive - they measure the area and take photo's of it to show the consultant.

I had to put 2 fists under my bottom to tilt and lift myself up for them to get a good look around!