Hi everyone. I have a large endometrioma (very large...between 15-19cm) on the left and a smaller cyst/cysts (probably also endometrioma) on the right ovary. I just wanted to ask whether anyone has ever experienced anything similar.
The cysts are not always painful, but on the right side I do sometimes have pain to the touch and the odd twinge or ache. This sometimes radiates out to my hip or even down the leg. Obviously this side is unbelievably precious as I want to have children. Does this pain sound like something anyone else has experienced?
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Noodle31
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Yes and Yes, everything you mentioned above is what I had experienced.
Long story short, I was diagnosed with endo after 3 days of being a in patient. After doing a transvaginal scan they found the cause of my severe lower abdominal and pelvic pain. I had two large chocolate cyst, 22cm and 19cm in my left ovary and one cyst stuck behind my uterus which was the reason for me being in such pain when walking.
I was on the pill had 9 hospital admissions in 11 months all under the care of gynaecology. I had a long rocky road with them, as my last admission at the hospital I was accidentally overdosed by a nurse, I say accidentally because it had been a very busy night in emergency department, though this mistake could have taken my life, as I had a cardiac arrest in the hospital I was admitted for 2 weeks. I then discharged myself and went to my gp to refer me to a endo specialist who would be better at dealing with my pain.
Once I had my consultation with the endo specialist he sent me for MRI which my gynaecology did not do, I went from stagr 3 to stage 4 endo. Which explained why I had pain in my bowel and found it difficult to sit on a chair at times. As I had endo in my bowel.
I had my first ever surgery and lap in August 2019, I was given the all clear in January 2020 via mri scan.
My pain used to start mainly in the left ovary which is understandable as it was in the left ovary, i would get lower back pain, left thigh pain like a dull throbbing pain and on top of that the lower abdominal and pelvic pains. I did used to manage the pain with codeine but in time this was no good. After surgery I was taking cocodamol and that had helped a lot. I try not to take it unless if I am finding it extremely painful to move around.
I am due to have my 6 months follow up in July hopefully if nhs reopen for patients again.
Have you had a lap for yours yet. I too want to save my ovary as I was at the time 29 and not got a family. it is important you stress that to your specialist so they are aware. They managed to drain the cyst with minimal disturbance to the eggs.
Hi BrightLight88? Thank you so much for taking the time to reply. Did you have the cysts bilaterally or two of those measurements on one ovary? And did they sometimes hurt to the touch? Thanks again - you're the first person I have found who had chocolate cysts of comparative size to mine. And I'm so sorry to hear about your incident in the emergency room! I have not had a lap yet - I was actually scheduled as an emergency before Covid and meant to be operated on in March...long story short, that didn't happen! I also spent some time in the emergency room recently, not fun.
yes I was first diagnosed with just the one stuck behind my uterus, September 2018, within 2 months of my next scan they found that I had 2 new ones in my left ovary. Yes they were in one ovary in the left. That side of my pelvis had a slight bump too, as if you could feel the cyst ☹ They were both squashed in one ovary hence why my specialist wanted it out before it damages the eggs if it was to pop itself inside. It only hurted when i would have flare ups other than that i hardly knew I even had it till that second scan and what was really upsetting was to find that out 2 days before my 29th birthday. Those two cyst in my ovary grew without any pain. My specialist said endo sometimes grow silently some ladies experience pain some don't. But after that scan then I started getting the pain on the left thigh. The only thing that was getting me by before surgery was a hot water bottle.
If there is anything you want to know feel free to message me.
Thank you so much - I'll pop over the info! I'm impressed they managed to deal with endometriomas of that size laproscopically! That is so impressive. My cysts grew without pain too - I've only had pain the last few months, and largely attribute that to weight loss which probably makes everything more obvious. I did think I had an upset stomach and was just putting on weight, which in retrospect I kick myself for. I honestly had no idea.
Wow I can relate to you so much more, and it makes me feel more of a whole as in there is someone out there who has got similar if not preety much is me!! Yes is my surgeon has been amazing from the start. I remember the day I broke down in tears on my first consultation to the plan of the surgery and the excitement I had on the day of the surgery dont ask why I was so happy that I have been blessed enough to deal with this horrendous pain for 11 months only and finally get it out of me. I know some ladies have had pain since teenage I pray they get seen by someone who takes them seriously.
Its amazing how they can also do a hysterectomy via key hole its insane. Also its so small the scars you could barely notice.
I also lost drastic amount of weight 2 stones in 3 weeks when I was first admitted in hospital and slowly after lap I started gaining it again in a healthy way. Now I'm healthy weight.
hi. Hope you are having a comfortable day. I had a cyst off 10 cm on my right ovary which caused alot of pain to the touch and pain went into my hips, back and legs - was miserable even taking 29 pills a day didn't always keep me comfortable. Took some messing and hospital admissions but I was operated on in 2017. They found stage 4 deep infiltrated Endo, my right ovary had a reconstruction left had smaller chocolate cysts removed. They said my fertility will be damaged and ivf only option and in his words will be a long shot. That long shot is nearly 10 months old and keeping us on our toe's, they got eggs from both ovaries and we even have some in the freezer so it can happen even when they don't think it will. I did find the Endo diet helpful with pain as mine is on my bladder and bowel as well. Hope you get help soon. Xx
Thank you so much for this message, you've made my day! It is so difficult (especially when your surgery has been delayed and you are desperate for kids) - I'm sorry for your struggles but what a brilliant result in the end! I'm hoping to freeze my eggs asap after surgery.
I experienced the same pain mine was 12.5x15 cm in the end on my left ovary, some days it was fine other days it was awful. Under gyno I was miss diagnosed they thought it was a tube, had laroscopy to remove tube, woke up in agony to find they removed my ovary & had to have a small incision they also said there was a 3cm on my right but left it. Just the endometrioma no endometriosis anywhere else. In hospital for 5 days then allowed home, slowly recovered but ended up back in two weeks later when my period started with sepsis & another cyst exactly the same size on my right ovary! In 2 weeks how is that possible?They drained it said it wouldn’t happen again I felt like I had been to the butchers shop, when I went for a check up 6 weeks later they said it wouldn’t happen again & no need to freeze my eggs I was begging but my consultant said I’ve been treated & can do it privately he really had no clue about the condition. Well I felt the pain 2 months later, you know the pain you recognise it instantly went to the doctors had a scan another 6cm cyst on my right ovary & ive demanded to see an Endo specialist this time to see if they can save it or maybe freeze some eggs. I’m still waiting 5 months later to speak to someone. Such a horrible feeling and worry I know exactly how you feel just try & push for a specialist I wish I knew my condition before all this started so I could have to x
I'm so sorry for your ordeal. I've actually had to move in with family during lockdown because I have no transport and was terrified of having an emergency while waiting. Operation cancelled twice amid Covid. I ended up in the A&E a couple of weeks ago due to pain and was admitted. They considered emergency surgery then decided against it. I'm in pain mainly when I sit up which means I spend a lot of time lying down. Here is hoping we can BOTH get some positive resolution soon (and freeze our eggs). I'll be doing so privately too as I am single. There is a clinic which has an offer on this at the moment - if you DM me I will be happy to send you over all the details!
Oh bless you I really feel for you. Hopefully they can start to treat people soon I know covid is very serious but at the same time you can’t be like this for much longer! Yes please that would be fab x
Hiya, I had just over 7cm cyst removed in Feb, on my left ovary. My ovary was shot, they removed my ovary and tube. I pain just like you and my stomach always looked 4mths pregnant it neve went down.
Unfortunately I can't have kids the gynaecologist says I more than likely infertile, after years of trying. I'm 37 now and I don't think it's going happen.
I'm so sorry to hear that you going through so much...
I also had a CT on the 08th May that stated two ovarian Cysts on both the ovaries...The right measured 4cm and the left was 3'9cm..On Saturday I had to go back for a Sonar and you take so shocking how fast they are growing. .My Gynaecologist ended up booking me a Date for surgery to remove them.. The pain is so unbearable, achy, I vomit at times and get nausea out of the blue...it's a struggle and I'm oy still in my early twenties and I don't even have a child.
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