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Hello all!
I'm new to the forum and recently found out that I have a large 10cm chocolate cyst on my right ovary and possibly a smaller 4cm one on the left. I was also diagnosed with endometriosis. I'm only 26 and just got married 6 months ago. I actually don't have the pain like many of you described on the forum. Just a bit of pain during my period. I actually went to the doc due to the fact that I felt a bump in my abdomen (which is now obvious that it's the cyst) This is really weird because I hardly have pain is unlike what I read on forums and discussions with other cases. I do have digestive issues, like bloating and constipation though, but they're mainly mild.
My husband and I are pretty upset as we just got married and we were hoping to start a family soon. I was told that my right ovary is probably completely gone and might have to remove half of my left ovary. My chances for a normal pregnancy look slim.

I was put on a 3 month dose of diphereline PR 11.25 mg, which is another GnRH agonist. I was told that this would help with the removal of the cyst(s) after 3 months via laparoscopy.

I'm pretty scared and clueless as so what follows. Have anyone here experienced similar situations with large cysts? What should I expect coming out of the surgery? What are my chances for pregnancy? Help!! ^eyes^
 

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Hi Angela

welcome to Fertility Friends

I am sorry to read that you have been diagnosed with Endo and sorry to read about the Endo Cysts

I myself was diagnosed when i was 28, with Endo, there is no correaltion between the symptoms and severity of endo, initially i only had pain with period and digestive issues around ovulation and Period

There are a few success stories on the board, including myself, short version is told at age 30 to have a hysterectomy and at 35 with part of one ovary i had a little boy who is now 2.5 yrs

Why not pop across to the endo chit chat there are ladies there at different stages

If you have any more questions feel free to post them the ladies on the boards will be sure to help if they can

Em
 

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Hi Angela,
Your in a very simular situation to me. Im 26 too and have been trying to concieve for about 2 and half years now. I had a 10 cm chocolate cyst removed from my right ovary in september by Laparotomy as they said they couldnt do it by key hole due to the size of it. I was told before the op that i was going to loose all of my right ovary but they managed to save 2/3rds of it. I also had small ones on my left ovary which they just ended up draining, and my left ovary is fine. I was then diagnosed with severe endometriosis.

I was in hospital for a very long 5 days( well it seemed like forever anyway) but i think yours will be different with having the lap. Iv been off work for 4 months now as they also had to do the incison from my belly button and not the c section one. Im due back work in jan, and i actually cant wait get back to normality and some kind of routine! (doubt il be saying that after a week ha!)

Iv just started a 3 month course of Prostap to try and calm the endo before possible tx next year, im due to see my consultant in feb.

I too worry if il ever get pregnant but i do hear success stories and this web site is fab as you find so many people in the same boat as you.
xx
 

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im 27 years of age and been ttc for 2 years, a year after without getting a hint of BFP and I went to see my GP and after a few scans, it seemed that I had endometrosis my both of my ovaries. I was quite shocked as I never had a symptoms apart from the odd spotting inbetween cycles which I thought was normal.

In february I ended up having lapartomony like Niky but but across above my bikini line as the endo was too big to do it by keyhole (10x10cm on left and a few small ones on right) was off sick for 6 weeks. A few months later I had another scan and unfortunately it had come back (5x1cm) and was put on Prostap straight away which puts your body into a temporary menopause,(the aim was stop it growing before I go down the IVF route) I was on that for 6 months and went straight into IVF which failed :(

Ive been told there a slim chance of me getting pregnant naturally but I refuse to believe that as deep down I believe it will happen one day and hoping that next year our year  ;D
 

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Its seems that wev all been through the same kind of thing!

Im not sure what my consultant will say in feb as he says he ideally wants me to have 12 months off tx, but im quite inpatient and may be the right time to have some kind of tx after finishing the Prostap. Im going back to see my GP tomorrow as i am getting a bit of pain on my right side and feel a bit sore, my stomach is also quite swollen and im worried that my cysts may of also returned! but not sure they can with being on the Prostap?

Did you get any side effects with the Prostap? touch wood im ok at the moment had a bit of bleeding at the start (just had my first injection) but seems be calming down now.

Whats your next step? have they decided IVF?

Yes i hope 2011 will be the year for all of us! xx
 

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Nixy -I had no side effects at all but I was on HRT, whether that helped Im not sure. I wouldnt of thought the endo grow while on Prostap as your ovaries shut down hence no periods but Im not sure. Hope your GP will give you answers tomorrow.

I got my first period 6 weeks after my failed IVF and and been bleeding lightly on and off since xmas day so this my cycle all messed up now ^idiot^

I can try IVF again in 6 months but have decided to wait 12 months instead to give my body a break.

Angela - forgot to say if your having a laparoscopy you should feel ok after 2 weeks and have read that the chances off getting pregnant is better upto 6-9 months of the lap
 

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Im not on HRT and my GP hasnt mentioned it so will see what he says tomorrow. Thankyou!

Hope your cycles settle down and hope to keep in touch with both of you, its good to chat to people in same situation and have been through the same.

xx :)
 

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Discussion Starter · #8 ·
Hi guys,
I feel a bit better now knowing that I'm not alone!
From reading others' posts, it seems that 10cm is pretty big to have the keyhole surgery. I'm wondering why my doc is so sure that this can be done for me. Has anyone gotten laparpscopy despite the large size of their cyst(s)?

I just got the results of my Ca125 test today. It's 48.43 which the doc said is slightly elevated but not to be concerned with since I have endo.

Now since I had the GnRH shot, I need to sit and wait 3 months for my surgery, which is kind of nerve wrecking...
 

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My results were very high thats why he wanted to removed it so quickly as with me they weren't entirely sure what it was! they were querying Ovarian cancer but thank god it wasnt! ul b fine thou as you already know you have endo!

Are you also on Prostap? How you feeling? xx
 

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Angela I think it depends on your surgeon who will do the op, if he confident and has experience he may be able to do via key hole.

I did a blood test and MRI scan just before the lap and wasnt told what the results were!
 

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Angela    Hi and welcome to the board.  I've got severe endo and was put on IVF waiting list.  Basically 1st go resulted in a BFN but 2nd go I was put on Prostap for 3 months to dampen the endo and then straight into 2nd go of IVF and we got a BFP.  I know everyone is different but we managed a BFP with both age (was 39 at time) and endo against us and we have a gorgous little girl know.  I know its confusing at times but I found it handy to write down all my questions b4 I saw my consultant as I often got too upset and forgot to ask things.  Good luck xxx
 

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Hi,

I also have endo grade 4 (severe) and have had 2 endometriomas/chocolate cysts. The first one was 15 cm and was removed by laparoscopy. Another endometrioma grew back on the same ovary within a year but it was only 5cm by the time it was removed, again by laparoscopy. I had it done at UCH in London and had very experienced surgeons which may be why they were able to operate on the large cyst through keyhole.

As far as fertility goes, I was told that even though the 15cm cyst was removed my ovary was still functioning, although the consultant did say that there could be some damage to it. So I don't think having a large cyst removed necessarily means that the ovary won't work. I have read and heard though that endometriomas can cause infertility as the liquid from it can destroy sperm, so it's good to have them removed.

I guess every case is individual but I think there's hope for us with severe endo to get pregnant, even naturally. I think it also depends on your tubes, whether or not they are blocked or patent. I had mine tested with dye during both laps.

I'm on the waiting list for ivf but have been offered iui in the meantime as my tubes are open - has anyone else been offered iui?

All the best,
Amelia
 

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Hi Amelia,

Im due to see my consultant in Feb to discuss my next step but he has mentioned using IUI in the past before IVF. This was before my endo was discovered so im not sure if that will be still an option. I also had the lap and dye and they were fine with no blockages and he says my uterus if fine too. So mayb he will still suggest IUI in feb?
Have you decided to try IUI while your on the waiting list?

With your cyst growing back what symptoms did you have? was it similar symptoms to your previous cyst as i seem to be getting a bit of pain on my right side (dull ache - similar to the pain i had with my previous cyst).
Im currently on Prostap and have mentioned it to my GP but he doesnt seem too concerned as he says cysts shouldnt grow while on Prostap! (but to b honest i dont think he knows alot about gynea as he doesnt know alot about the Prostap when i asked him)
I asked for a scan  but he says its not necessary!

xx

xx
 

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Hi Nixy

That's a really good sign that your tubes are clear and from my experience it seems like you could well be offered IUI. I'm going to try it especially as it is a lot less invasive than IVF and the chances of success should still be higher than trying naturally. I've been offered either stimulated or natural - not sure which to go with. They say stimulated has better success rates as you can be sure of ovulating.

I'm not sure if I had any symptoms of the cyst - maybe some twinges during my cycle and pain on intercourse. But I think most of my symptoms come from an endo nodule I have in the pouch of douglas which can be very painful at times. it's very difficult to operate out as it can damage the bowel and they don't want to risk that before I've 'completed my family' (whenever that might happen).

I think it's difficult with endo to know exactly what is causing your ache. I was told by a consultant that a tiny piece of endo can cause lots of pain in a completely different part of the pelvis to where it's located. So it could be a cyst or something different I guess. My endo clinic says I should come back for a scan if I get any pains so I would have thought that you should be scanned if you have an ache to investigate what is causing it.

I don't know anything about prostrap as I haven't been on any hormonal treatment other than a mirena coil briefly, so not sure if endo can grow while you are on it (although I realise it isn't supposed to). I think it's good that you are going back to your consultant in Feb as it doesn't sounds like your GP is very helpful or knowledgeable. Do you think you will get a scan when you see your consultant? That's what normally happens when I go.. I guess you could also contact the consultatnt or endo clinic if you think they will see your sooner because of your pain.

xx

 

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Hi,

Iv decided to contact my consultant earlier than feb as i am getting a bit worried about the pain, it isnt constant but i recognise some of the symptoms (my stomach is now quite swollen). Il ask for a scan as soon as i see my consultant, so should hopefully be next week!

Il also mention about IUI and see what he says, he did say he wanted me to have 12 months off fertility tx but i think after iv finished the prostap is probably a good time start tx! Well hopefully if something hasnt returned!

Any ideas when you'll be starting IUI? Iv also read that by taking Clomid uv got a better chance of conceiving but last time  i had Clomid it caused my cyst to grow to the size it did, so not sure if itl be an option for me.

xx
 

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Hi nixy

Great that you got an earlier appointment with the consultant, hope it goes well. I can understand why you're concerned about the cyst having grown back, I hope for you that it hasn't. But at least if it has you can have it treated sooner.

I wonder why the consultant wants you to have 12 months off treatment? Is that related to clomid causing the endo to grow? I'll have a look in to Clomid with IUI, but it's good to know that it can make endo grow, as that's obviously not a good thing. Maybe it's because there is estrogen in it, which is as far as I understand what drives endo. Did you ever get any answers as to why clomid had that effect on your cyst? I think there are other drugs you can use with IUI which might be better.

I'm starting IUI in March - well that's when my first meeting is so not sure exactly when the first cycle will start but guess it will be sometime in April.

xx
 

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Just wanted to add a success story..... I had 3 cysts which were 4 8 and 12 cm and I lost the ovary completely. I was then on the Pill for 6 years, then fell pregnant naturally 4 months after coming off it. Fertility is not an exact science and I think a positive attitude with as little worrying as possible can produce miracles!

Keep smiling and trying! You're young yet as well, so its all good
xx
 

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scubababe its so lovely to hear positive stories like yours :) Some days Im positive and then others where I feel that it never gonna happen but I will never give up!

I was never given Clomid as my consultant said that it feeds the endo making it grow bigger and I went straight to IVF, but I have heard endo patients been given Clomid so I dont know who right and what

xx
 

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Scubababe what i wonderfull story, its lovely to know that things can happen!

Amelia

When i first went to see my consultant for fertility tx they werent aware that i had a cyst. I had one cyst about a year previous that had ruptered but had settled down. My consultant sent me for the blood test and HSG, both results were fine. He then suggested we start Clomid, i had been experiencing pain on my right side while taking the Clomid (where the previous cyst had been) but continued to take the Clomid i think he said that it was Ovarian hyperstimulation?? (produce too many eggs) and the cyst just grew and grew! It was proberly my own fault as i continued to take the Clomid, but didnt know if it was just Ovulation occuring on that side. I then had the cyst removed and they discovered the endo.
Il ask him what my options are when i see him next week and will keep you posted.

xx
 

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scubababe - thanks for the lovely success story - congratulations and it's really nice to know that it can happen despite endo  :)

em09 - I feel a bit like you, some days pos others neg but I keep going with it. That's good to know about clomid - it does sound like I need to be careful about using it with endo.

nixy - keep me posted on how your appointment goes and what your consultant offers you treatment wise. It's been really good to swap experiences, it can be isolating not knowing others with severe endo and what has and hasn't worked. I'm definitely going to look into the effects of hormones on endo now before treatment.

^hugme^

 
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