Cyst on ovary: I recently posted here about... - Endometriosis UK

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Cyst on ovary

Jooniper profile image
19 Replies

I recently posted here about pain on my left side after an ulcerative colitis flare. I’ve been having this pain since October and was given antibiotics for diverticulitis. All my other UC symptoms are now gone and a colonoscopy and CT scan have ruled out any further bowel issues but the pain is still there and worsening. The CT found incidentally a lesion in my liver and a 3x3cm cyst on my left ovary. I am convinced the pain I’m experiencing is due to the cyst. I have been off work 3 weeks due to the pain and am now on Gabapentin and tramadol. I have seen 4 GPS in the last fortnight and they all tell me the cyst is too small to be causing this much pain. They have written to, phoned and emailed the gynaecology department at my local hospital to get me seen urgently by a gynaecologist and I am still waiting. The GPS also tell me that my endo maybe causing this despite having had the Mirena coil fitted last May. Has anyone had an ovarian cyst and how big does it have to get before being taken seriously?

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Jooniper profile image
Jooniper
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19 Replies
Endowarrior1807 profile image
Endowarrior1807

I have some ovarian cysts too and the biggest is only about 4.5 x 4. - I get a lot of pelvic pain but mainly on my lower far right side of the abdomen and my gynae thinks the cyst is causing the pain for me

Jooniper profile image
Jooniper in reply to Endowarrior1807

Thanks very much for replying. Have they got a plan that manages your pain and are they planning anything to remove them? Hope you don’t mind me asking but I am in debilitating pain, worse than anything I ever experienced with endo and I am astonished that no one seems in a hurry to help.

Jooniper profile image
Jooniper in reply to Jooniper

Although I was 45 before they diagnosed endo with a lap two years ago, so perhaps I shouldn’t be surprised.

Endowarrior1807 profile image
Endowarrior1807 in reply to Jooniper

I know what you mean - the pain is so bad.

My GPs originally didn’t believe me so it took me over 2 years to get a referral to gynae. They started me on Provera and whilst that helped a bit, not enough for me to back to living my day to day. I’m waiting for a surgery date currently to see if removing it and my other endo helps

Jooniper profile image
Jooniper

This is terrible. I am so sorry you are having to wait so long. Keeping fingers crossed surgery happens soon.

Cockapoo-2016 profile image
Cockapoo-2016

I was rushed to A and E a year ago with a severe lower abdominal pain, had a CT scan, MRI etc blood and you name it. The A and E doctor found a cyst on my left overy 8 cm. I was referred urgently to the Gynecologist the next day, complete mess up they couldn't find the A and E doctor referral so I had to sit down in Gynecology dept for over two hours in pain not knowing what was going on, so then they did my ultrasound scan found a cyst that was 8 cm on my left ovary. Then I was booked in for urgently laparscorpy there found out at 43 years old I had endo and the cyst had to reputed.

You need to push them hard, for them to operate the cyst has to be 4cm or over. Keep fighting like I had to because I was fobbed off here there and everywhere.

Good luck and keep fighting them, you can not suffer in pain 💙.

Jooniper profile image
Jooniper in reply to Cockapoo-2016

After five GP visits in the last two weeks, I brought myself to A and E yesterday becasue I couldn’t cope with the pain anymore. After a six hour wait, the gynaecologist admitted me to the gynaecology ward. He is adamant that the cyst can’t be causing me the pain, although his colleague disagreed but at least I’m here and they are actually doing something! Thanks for replying; I am feeling a little more hopeful this morning 🤞🏽

Rainbow2468 profile image
Rainbow2468

Hi i have cysts and a twisted ovary, mine are 4.5 cm. And I don't get any pain at all. I'm so sorry to hear your suffering so much, I hope you get things sorted quickly, sending you a big hug ❤️

Jooniper profile image
Jooniper in reply to Rainbow2468

Thank you. I’m glad you’re not in any pain. Hoping for a scan today xx

Rainbow2468 profile image
Rainbow2468 in reply to Jooniper

Hope all goes well x

LuceRM profile image
LuceRM

Hi Jooniper, I’m so sorry you’re dealing with this.

In June 2020, I was found to have a cyst, which was found after x2 trips to A&E when my analgesia wasn’t working as normal. A&E were… useless. It was until I begged for an ultrasound that they sent me to a Sexual Health Clinic (Typical response to a teenage girl at the moment) for a scan. They found the cyst and I was, ultimately, sent to Portsmouth two weeks later for a more in depth scan. They didn’t do anything. They just waited and said it should go on its own. I had a Mirena at this point.

Mirenas are, unfortunately, linked to ovarian cysts. Whilst the incidence of experiencing a cyst is only raised minimally by having a Mirena, the link is still there.

There is no cure for Endometriosis. Many obstetricians use methods like the Mirena to stop a cycle because, it is presumed, stopping a cycle should stop any shedding of the uterine lining and therefore stop any lesions appearing.

GP’s are also… useless. They don’t deal with women’s health issues daily and are not overly well informed about women’s health, especially gynaecological disorders and diseases. The best advice I can give you is to be a ‘Karen.’ You should chase the referrals, phone the GP. The GP should be able to refer you to an ultrasound scan in the EPAGU (Early Pregnancy and Gynaecology Unit).

I hope you get an answer soon.

Jooniper profile image
Jooniper in reply to LuceRM

Thank you. Now I have finally been admitted I am feeling more hopeful that something will be done. At the very least, the pain is being managed in here. Hoping for a scan today then a plan moving forward.

ccfd9 profile image
ccfd9

One of the main bugbears of endometriosis is the pain levels are NOT linked to the amount of the disease. Probably linked to the closeness to nerves. Have you tried a gluten free diet, as that can help a lot of people, you can checkout endometriosis.co.uk if you need help.

Jooniper profile image
Jooniper in reply to ccfd9

I have quite a low gluten diet as I find it helps manage the UC. But I think you are right about the size and pain link. In the lap I had in 2021, they found two places of endo and left them due to their positions near organs. But the agony I felt when I had periods seemed disproportionate to what they said was there. So many doctors have said this cyst is so small, this can’t be causing the pain. But this pain has only been here since October and I know this cyst was here in July 2021. I am so glad the gastro team did all the investigations that they did do when I had my UC flare at the end of last year, as I think the gynea team would be saying the pain is because of the UC. Luckily, that has been categorically ruled out.

ccfd9 profile image
ccfd9 in reply to Jooniper

try for a couple of months no gluten. I know that some people it really helps and even if they have a little gluten they feel the effects weeks later at their period.

LCVF profile image
LCVF

You can shrink cysts using blackstrap molasses and apple cider vinegar. Also protealytic enzymes on an empty stomach can help. And for immediate relief try a castor oil pack, which can also reduce their size. I have had cysts before, the largest having been 13cm . Usually from my experience the pain comes and goes with cysts, though it can be very debilitating. The pain can also travel around and not always be in the one area. I hope you figure out what it is and feel better soon.

Jooniper profile image
Jooniper

Thank you so much for this advice, I had not heard of any of these ways to help. I will bear these suggestions in mind. Currently morphine is masking the pain!

Amyrebecca246 profile image
Amyrebecca246

Hi, I think a lot of the time it depends on individual doctors/hospital trusts etc to decide how urgent a case is. I recently had a cyst removed that was 11cm but it wasn't bothering me too much until a month or so ago. I would just try and keep pushing to get seen, seeing as you are in pain, however bear in mind many hospitals have long waiting lists and add to that the strikes, bank holidays etc it may be a while.

Jooniper profile image
Jooniper

The replies I got to this post were so supportive that I was hoping there might be more support to share with me as the situation has progressed.

Shortly after this first post, I ended up in A&E as the pain was so terrible and I was admitted for a week in my local gynaecology ward. An ultrasound showed the cyst was not there, which may have accounted for the agony which drove me to attend A&E. I was discharged on the promise I would be having an MRI and a meeting within 6 -8 weeks with the endo specialist. It’s been a long winded process and I still have not had the MRI done but as my appointment came through for November, I decided to see him privately.

I have had two months worth of Zoladex, to see if the pain continues or stops with it. If the pain stops, he said we would discuss a full hysterectomy. If not, it will laparoscopy to see what can be done because it is likely to be adhesions either from a previous lap or from endo. The pain is bearable now and not constant. I was happy to be having either op done as I want my life back. I’ve been off work since the start of March and the pain is also being managed with a mix of long release morphine tablets, high dose of Gabapentin and oramorph. But I’ve read some posts on here that hysterectomy instantly ages you, your organs collapse inwards, you are prone to prolapse and all sorts of unpleasant things. The literature he gave me to read didn’t mention that sort of thing. I’m 48 next month. Has anyone had hysterectomy and are through the other side with some positive experiences? One post recently said that people are always worse off post hysterectomy.

I am from a background where we don’t discuss this sort of thing and as my dad is having major open heart surgery on Tuesday, I am trying not to burden my family with my worries as he is my main worry.

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