Has anyone had an endometrial cyst on their womb?

Hey I'm new to all this forum stuff and still getting to grips with all of the terminology... About 3 weeks ago I was rushed Into hospital after a blood test as my blood count was 6.2 (normal is around 12-14 I believe in women) I'd experience consistent heavy, clotting bleeding and was in excruciating pain for about 7 weeks before I went to the doctor...

I've always had problem periods and it was always dismissed and put down to weight or having a low pain threshold and being abit of a drama queen, but it was the past 2 years I knew something really wasn't right as I was lucky to have a period once every 3 months, but since being rushed I to hospital for a blood transfusion they have since discovered via an ultrasound and internal that both of my ovaries are covered in several cysts, one ovary they couldn't actually locate and are assuming it's where they think they saw it due to the mass of cysts attached.. I also have a 13cm suspected endometrial cyst/lump/mass on my womb which is actually dislodging my womb and putting a lot of pressure on surrounding organs... I also have a lot of build up of endometriosis which may have infected my bowel too, I've done a fair bit of research and only really seen people have these kinds of cysts on their ovaries..

I've been for an MRI about 3 days ago and awaiting a follow up appointment with my consultant.. Iv been give worst case scenario of a hysterectomy at the age of 22 and with no children that's a pretty scary thought, but I really hope it is worst case scenario.. Iv also been told I could lose one or both ovaries...

I just wondered if anyone else had or is having a similar situation as I'm so confused and don't even know where to begin!! I've been told by doctors surgery is inevitable and I may not get away with key hole.

Hope someone can shed a little light on what seems like a never ending black hole x

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  • Hi, this sounds very similar... I had a blood transfusion in March due to Hb of 9.6. Transvaginal scan the next day showed fibroids, a cyst and I was told it was suspected endometriosis. Gynae referral took another month to come through where I signed patient consent for removal of the cyst and endometriosis via key hole but possible C section open surgery. At this appointment they asked me to have a ca125 blood test. After it came back at 371 (normal is 35 but it can be elevated by fibroids and endometriosis so unlike me don't panic if it comes back high) I was referred to the gynae oncology team. Last week I had a CT scan and they called the next day to say the cyst had grown and they still didn't know the nature of it, and they wanted to operate as soon as possible.They operated on Monday am - ended up being a midline incision (vertical up to my belly button) and surgery successful in that on biopsy whilst in surgery all appears benign but it was severe endometriosis. They took out the cyst (similar size to yours) and I did lose that ovary and tube. They also found a cyst the other side which they drained as I had asked if my fertility could be preserved if it wasn't cancer. He also took out 4 fibroids, 1 of which had caused a big hole in the womb and could be the reason for the anaemia. Sounds silly but thrilled it has finally come to an end with the surgery completed as I have had pain for several years and was told I had stress related IBS until I changed doctors out of frustration at the beginning of the year. Then it has been horrible having the nature of what it was has hanging over my head since before the double bank holiday. It has been painful this week post surgery but really feeling better today and have been up and about today and managed to go to the loo. Tomorrow I may even be allowed home.

    Make sure you take someone with you to your next appointment and write some questions down in advance so you get all the facts you need. Also make sure you tell your friends and family as it has for me been an emotional time and their support has been invaluable.

    Also if you lose one ovary this shouldnt adversely affect your fertility and if it is worse case, if they operate you could then be through the worst of it. Sending you loads of positive vibes and warm wishes. If you need any more info, just let me know xxxx

  • Thankyou for your response, it's unbelievably reassuring to know someone's gone or going through the same thing, although I would not wish this upon anyone it's nice to not be alone if that makes sense.. Glad surgery went well for you, everything been quite quick up until now it just seems like forever waiting for that follow up appointment.

    I had the same problem with IBS symptoms, I think I can deal with the possibility of losing an ovary I may try to get some eggs frozen prior, incase there's further damage down the line...

    I know what you mean by feeling like you've finally got somewhere after having surgery, I feel like there's light at the end of the tunnel knowing I'll have it in black and white in a few weeks time, it's just a stressful process and an awful waiting game!!

    Iv been very lucky, family, friends and work have been very understanding and supportive, Iv literally just gone back to work after just over 3 weeks off. Iv been very open with people about what's going on as it's hard to understand something you can't see and when I look fine on the outside and cover up the pain well through the grit of my teeth, I'm extremely hormonal at the moment as I'm on a fair bit of medication to stop the bleeding!!

    How long are you off work since the op?! Was it painful? I've never had surgery before and up until being admitted for a blood transfusion 3 weeks ago if never been in hospital in my 22 years!! So it's all quite daunting!

    I'm also finding it quite hard to enjoy my best friends pregnancy as she's nearly 8 months pregnant I feel awful for feeling the way I do, but with the uncertainty of being able to carry my own child... It's all a lot to take in!!!

    X

  • Sorry got my Hb wrong, I was 6.9 when they transfused. Brain a bit like mush at the moment - keep forgetting things and getting a little confused.

    Surgery was at 8.30am on Monday, I was coming round by 11.30 and back in my room just after midday. I had an amazing thirst for the remainder of the day. They gave me an epidural which was kept on for two days to numb the pain. I thought it wasn't working but in reality it was excellent (which I found out the evening they took it out and the real pain hit me!) however this didn't last - it was just my body waking up and by the next morning pain was under control with various oral meds. Last night they took my bag out which I was a bit weird about before the op but really appreciated this week as getting up and peeing every hour for the first couple of days would have been a pain. It is tender moving about but I can walk about and today I managed a shower and to wash my hair (just couldn't reach below my knees so needed a nurse to help)

    Tonight I started a medical menopause (zoladex) to give me 6 months after the surgery to calm everything down and reduce chance of the fibroids and endometriosis just coming straight back.

    Time off is to be seen, but due to the midline incision etc my consultant has told me to expect to need 2-3 months off work. I had a week off after the transfusion but worked from home on a couple of days too when I wasn't up to travelling.

    I also hadn't had any big surgery before and other than my transfusion the only other medical thing I have had was a weekend in hosp after an asthma attack 5 years ago.

    The nursing staff have been wonderful and this forum prepared me with what to expect and what to take ie body wipes, big pants two sizes too big, sanitary towels, peppermint tea, metal free hairband.

    Don't beat yourself up for being emotional, this is big stuff with a huge impact on your quality of life now and into the future. I am sure your friend also understands how tough it must be for you. Be positive and rest well ahead of your op so you are as fit as possible for it (I wasn't so good at this last week and wish I had taken it easier).

    Let me know how your appointment goes xxxx

  • I'm sorry to hear this, my situation has been reasonably similar. My endo was found when my appendix ruptured and when sent off the cells showed endo.

    I have had multiple ops now to remove the cysts etc, and a month ago I had huge bleeds for about 90 days and a hb of 5.3 (with a coil in, on depo provera and zoladex) which I had my colleagues check (nurse) at work as I felt tired and breathless, I was started on tranexamic acid to stop the bleeding and asked to have a transfusion, I refused!

    Had further surgery planned to clear it! I've had two open and four lap and after my laps I was back at work in 4 days and after my open I took 2 weeks max! I guess it depends how you feel but I liked to get back to work to keep my mind busy x

    Until my endo ruptured my appendix I hadn't been in hospital as a patient even though I work in one as a nurse! The ops for me didn't hurt much, as I was relieved that practically instantly the endo pain which was horrendous for a long time had gone! I only took paracetamol to keep on top which was far less than previous for endo pain.

    I hope that helps

    Take care

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