Hi, I'm 32 years old and have just been diagnosed with an endometrioma and, by default, endometriosis. I've not had a very helpful medical journey so far and I'm left feeling really confused, upset and frustrated. Any advice will be gratefully received!
Nearly 5 weeks ago I saw my GP due to what I thought was a stomach bug - sudden onset of upset tummy, vomiting, fever and pain on my right side. My GP sent me straight to A&E with suspected appendicitis. I was admitted and went for an ultrasound on my way to the surgical ward. The ultrasound showed my appendix was fine, but that I had a large (7-8cm, size of an orange) endometrioma on my right ovary which was haemorrhaging. I was then moved to the gyne ward where I stayed for almost a week. I had an MRI scan before I was discharged, with a promise of a repeat ultrasound 2 weeks later and an appointment with the consultant to discuss surgery in 3-4 weeks.
I didn't get any further contact from the hospital. I tried to call to chase it up several times and was passed around outpatients, ultrasound, gyne ward and the consultants secretary. Only after contacting PALS did I get offered further appointments. The repeat ultrasound showed no change in the endometrioma. For my (female) consultant appointment, I had to wait two hours from my appointment time to be seen. Only when I walked into the room I found out I was actually seeing a male Dr who was helping out in the clinic. He wasn't able to tell me anything specific to me and didn't seem to have sight of my ultrasound / MRI scans. I had to explicitly ask if I had endometriosis and was told that I must have to have an endometrioma - I only knew to ask that from the reading I'd done and that was the first time anyone medical had talked to me about endometriosis. The appointment felt a complete waste of time - there was no new information to be had, for him to say I now needed to be referred to an endometriosis team who only meet once a month. He wasn't able to give me any indication of when I would be discussed, next seen or when I would be put on the waiting list for the surgery I need. It seems like I am still months and months away from treatment that I was told on day one I need. He checked with the female consultant I was supposed to see and I can contact the local private hospital and request to be seen by her if I want to go down that route.....
I asked about fertility and my anxiety about having swift treatment so my husband and I can start trying for a baby asap, as we had planned. When I was in hospital initially, all the Drs I spoke to said not to get pregnant before I had the endometrioma removed because if I had further problems with it and required emergency surgery there was an increased risk of miscarriage and complications. My GP also advised that I shouldn't get pregnant until after I had surgery. However, the Dr. I saw instead of the consultant said to go ahead and try due to the potential reduced fertility the endometriosis can cause. If I got pregnant before the surgery they would let me carry on with the pregnancy and not operate. If I wasn't pregnant then they would go ahead. He also indicated that the endometrioma could shrink / clear itself up if I got pregnant.
I don't know what to do for the best. I don't want to put my life on hold for an indefinite period of time waiting around for surgery but also I don't want to put a baby or myself at risk by getting pregnant whilst I still have this endometrioma. Has anyone got any advice or experience of pregnancy whilst having an endometrioma?
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doodledaisy
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Yes if you have an endometrioma you have endometriosis.
Your cyst needs to be removed as it's a big one!
I had to have a cyst. (Not as big as yours) drained when I was six weeks pregnant. I was so worried that I would miscarry due to the surgery. Thankfully I didn't.
I think you REALLY need to push to have that cyst removed (anything over 5cm's needs surgical intervention) before you get pregnant.
Could you afford to see the lady doctor privately but ask her to treat you on the NHS?
Pregnancy does not cure endometriosis but it does put endometriosis to sleep for a while.
Hi Barbara, thanks so much for your reply. It must have been really worrying to have that happen to you when you were pregnant, I'm glad that everything went well for you :o)
My gut feeling is that I need surgery before I get pregnant. I had a very early miscarriage last summer which was tough enough. I'm pretty miserable with it all at the moment. I think the size of the endometrioma is the equivalent of me being 15 weeks pregnant - and I do look like I'm pregnant with my swollen belly (bit lop-sided on the right!).
I work in another part of the NHS myself and am really aware of how important it is to support and validate the experiences of the people I work through their difficult times. I feel incredibly frustrated at the way my journey has been handled so far and that that paying to privately see the consultant I was supposed to see on the NHS may be the only way to speed this up. I'm very fortunate that my husband has private health care through his work and he has been able to add me on since all this started - apparently I can only have private treatment if it is for pain (which I am still experiencing), not fertility reasons.
I agree with your other reply that I should have been treated when initially in hospital. The plan for surgery was set out after the ultrasound on the day I was admitted.
I've read that pregnancy can help the endometriosis due to the change in hormones. I guess I'm unclear about whether pregnancy would shrink the endometrioma cyst or if it would only continue to grow throughout the pregnancy. I'm just really confused now after seeing that last Dr who encouraged me to get pregnant, which was totally against all the other medical advice I've had so far.
Did you have a laparoscopy procedure when pregnant to drain your cyst? xxx
Yes my cyst was drained via laparoscopy. During the pregnancy I still experienced pain. But the cyst didn't fill up again.
The cyst did re fill after I finished breast feeding though.
It's really important to get cysts cut (excised) out. If they just get drained they will just fill up again. Which mine has done numerous times over the 20+ years of having endometriosis.
I am sorry to hear that you suffered a miscarriage last summer. I really hope that once your cyst is sorted, you become pregnant and have a lovely baby..
I have had five pregnancies but two ended in miscarriage. I have three super children.
Cyber hugs
Barbara x
Doodledaisy
I have to say, that the doctors should have operated on your large cyst while you were in hospital!
I would wait, an endometrioma is often linked to knackered tubes and you could have a hydrosalpinx (blocked tube with fluid) this can cause issues with implantation and affect your chance of conceiving, personally if I were you as hard as it is I would wait and get a clear out that's what I did, I had 2 big ops for stage 4 and then ivf
Also mine was measured at 8cm and when they operated it was 15cm, they are aggressive things! Since I was declared endo free after total periteneoum excision last July it hasn't come back luckily, I also paid private to see a consultant then managed to go NHS from there x
Do you think the reason I have an endometrioma suddenly is because of a hydrosalpinx? It showed up on the scan. Tubes left in after hysterectomy. Consultant last week was surprised I've suddenly got a cyst after never having had one before. He believes the cyst was causing the pain at Christmas as I was pain free after the hysterectomy. Fingers crossed this is the case and I shall be ok when I have it removed in May. (Sorry to but into your conversation) x
I have had endometriomas almost continually. When one ruptures/ leeks it gets drained/removed, another one appears. At one time I had a 10cm one which needed to be removed via laparatomy.
I have never been told I have fliud in my tubes. Having a cyst suddenly, doesn't mean you have fluid in your tubes.
Cysts can be either slow growing or can develop very quickly. They are very naughty creatures
Thanks cuddlybarb. I know mine is being a pain in the neck- or side! Stuck my first hrt add back patch on yesterday. Hoping for miraculous improvement energy wise.
I had an endometrioma throughout pregnancy, it was fine for me but risks meant I was monitored. (Pregnancy was ivf due to blocked tubes and no ovulation)
Had it removed the following year along with the ovary, another one grew straight away, this time I'm putting off getting it looked at as it's my third, I feel like I'll always have one and I don't want to risk losing my last ovary!
Hi I opened this blog today... Even though this is dated 2 years ago, I just want to share my experience .. Incase someone like me opens this for advice.
I came to know that I was pregnant in Jan 2015, it was unplanned FIRST pregnancy but a very happy news and in my first ultrasound scan at 6 weeks, found out there's a Chocolate cyst in my right ovary measuring around 4.5 cms. I had very regular menstural cycle always but this thing shocked me and started worrying about my baby.
But the radiologist told me Not to worry about it as Pregnancy is the cure for this (chocolate) type of cysts ... I had no idea what kind of cyst that is. Then really hoped for that to reduce in size as told by doc. Waited n worried till the next scan after a month or so. Luckily in that scan, he said the chocolate cyst was fully reduced and diminished. My husband and I were very happy and relieved. Months went on and in every scan and checkup, Baby and I were very healthy and good.
But the Most unfortunate and shocking thing happened to us On the Due date (40 weeks), due to hospital staff n Doctor's NEGLIGENCE, while I was in Induced labour they didnot monitor my baby's hearybeat for 4 HOURS, my baby boy was still born from Natural delivery it's been 10 months since We lost out baby but still Miss Him every second.
So, I just shared my own experience. Am not exactly sure about other cases. Please consult a good doc. Hope u r already blessed with a lovely baby by now.
MAY EVERYONE BE BLESSED WITH A HEALTHY BABY and both Mother and Baby live happily n healthily .. Sorry for my Big reply.
My baby's still birth is Totally because of Doctor n nurse negligence.... This has nothing to do with the chocolate cyst as it was disappeared in my 10th week itself all by itself. I didnot take any specific medicines for that I think.... And even after delivery I don't think that choc cyst formed again. Am not sure of the recurrence.
Thanks again for reading my message. Wish everyone to Be Happy and Healthy!!!!
Chandanam, I am so sorry for your loss, send my prayers. I can't imagine what you are going through because it happens to me 10/11/2015. Are you still ttc or did you get preg?And am trying to conceive for my first, I am 39 and have a chocolate cyst on my right ovary. I will be going for a follicle scan on Wed, I had a scan on day 1 and has 3 follicles on my right and 2 on my left and am currently on letrozole day 3-7. I wonder if my follicles that are on my right (bc of endometrioma) ovulate
Hi, I had a laparoscopy to remove two chocolate cysts then in March this year I was told I had three (6.5cm) ones on both ovaries. I had been trying to conceive for years. Unbeknown to me I was pregnant when I had the final ultrasound for the cysts. I was initially monitored but now I'm 25 weeks they say the cysts have gone. They will return though!
So I say you have to be aware of them but it is possible and there was nothing wrong with my tubes. Check out my last post about my journey, I don't like to bore people by repeating myself and I do consider myself one of the lucky ones but I just wanted to say it can be done and baby kicks cysts ass x
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it's been 10 months since We lost out baby but still Miss Him every second. 
Sorry for my Big reply. 
x
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