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Advice/support/experiences please-ovarian cysts?

Posted , 12 users are following.

maryvee
maryvee

I have cysts on  both sides. left hand side about 11cm, right hand side 10cm. 

I am being sent for an "urgent" MRI in 7 days. Rather worried how I will stay still for a whole hour all by myself in the MRI? Any tips please?

Then I go back to the consultant the week after to see if they are cysts or cancerous and how we will treat them. 

I am having dizzy spells where I feel that the world is turning to the right. Constant back pain that feels like something is pressing on my back which makes me feel like I need to go poo.. Gassiness. I can feel the cysts as painful lumps from the front too. My stomach is hard and stretched. 

I'm feeling very tired from the discomfort and worry.

My appetite is still pretty normal.

Sex is a little painful in certain positions as my tummy is tender and I can't fold up my body properly. I'm not able to move as easily.

They have been "watching" the cysts for 2 years now and have seen them grow from 5cm to 7cm to 11cm. Only now are they doing something about it. 

My Ca125 test was 31 six months ago, it is now 37. 

I'm very anxious and on edge. 

I have no idea what the 'cysts' are made of though my last report said they have a "mild vascularity". 

Also, I am diabetic and I have PCOS.

Any advice or support ladies? I need it to get through this uncertain time.

5 likes, 260 replies

260 Replies

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  • Ellie1943
    Ellie1943 maryvee

    Posted

    Hi Maryvee. Sorry to hear you still feeling so stressed. I believe this is a normal reaction, I felt exactly the same until I had mine removed along with ovaries and tubes. I repeat what I said previously, it was NOT malignant! When you see your consultant on Thursday, tell him/her how upset and anxious you are and you want the cysts removed asap! Tell him the anxiety has taken over your life and you can't sleep, eat or function normally at the moment! Write a list to show them. Not long to Thursday now, just hang in there and I'm sure a plan will be made for your treatment. Everyone is different so we can't compare time and plans. It depends whereabouts in the country you live also. Waiting lists vary all over the UK. Chin up and keep posting as I'm sure the other ladies will be reading and pop in to help and reassure you. Best wishes, Pollyanna. X

     

    • maryvee
      maryvee Ellie1943

      Posted

      That's really good advice. I will have to be clear to them how anxious and upset I've been. I doubt it will bring any surgery through sooner of course but at least I will have communicated my needs. We are in London and I'm under Barts. I have no idea really how fast or slow they do things. 

      I am wanting my bedroom redecorated as I am such a neat person and hubby is incredibly untidy so I am wanting it all sorted out so I am trying to keep my mind busy planning a new bedroom. Sometimes it distracts me and sometimes it's just not enough to take the edge off my anxiety. 

    • maryvee
      maryvee

      Posted

      I have circular arguments with myself... what if its cancerous they will have to remove everything, big surgery and chemo and all that...that'd be terrifying. 

      And I read that laparoscopy can only be used on cysts up to 12cm.... mine are awfully near that already and with all this extra growing time, that could mean laparotomy too. 

      And I worry about the MRI showing up things I wouldn't have known about otherwise that don't cause me any problems.... I am sure an anxious mess at the moment. 

    • dobb34487
      dobb34487 maryvee

      Posted

      Oh dear,all those questions need a professional answer and everyone's case is different and surgery is tailored to the patients personal problem.

      These will all be answered when they know what they are dealing with.

      Don't worry with the what ifs,I think Google doesn't help either!

      I do understand about the MRI showing up other things.Im sure we all think that at the time.

      I saw about your decorating comment ,that's exactly what im planning.It got put on hold last year for obvious reasons,so im back on the case.Ive just wallpapered under the stairs and want the feature wall in the front room done too,I shall be doing it as no one else can wallpaper round here.But that's a good possitive thing to plan and you'll be in your room more when you get sorted.Maybe hubby will be tidier and get it done for you.

      smile x

    • maryvee
      maryvee dobb34487

      Posted

      I am the worst at googling... I was even doing survival rates last night. There are a few things that make me worry more.

      Women under 30 have the best survival rates. 

      Women over 30 who don't have any other medical issues do better than those that do.... And I have high blood pressure and diabetes. 

      Reading google doesn't help with the anxiety for sure. 

      I hope you enjoy your decoratng. Certainly just getting some tidying up done round here is nice lol x

    • dobb34487
      dobb34487 maryvee

      Posted

      I've stopped Googling,I'm 46 and at higher risk too!!

      I always find that if things aro home sont get done when your under the weather then there'snot much hope.Im getting less "eye rolling" and more help even from my 17 year old son,who is such a good but lazy young man.

      Plus it all acts as a distraction.

      X

    • dobb34487
      dobb34487

      Posted

      Excuse typo's,blinking predictive text changes alot of my words and buttons keep freezing...... sad
  • Acejohnston
    Acejohnston maryvee

    Posted

    Hi Maryvee my story is similar to yours. I'm 44 and started having hormone problems many years ago and was attending an endocrinologist prior to having my son in 2010. My hormones got worse after the pregnancy and in 2013 and 2014 was having night sweats, flushes, insomnia and periods every 21 days. I kept going to my GP saying I didn't feel well and felt it was my hormones and she gave me a multivitamin without doing tests and said it was probably early menopause. Developed pain in my ribs in October 2014 and gastro symptoms and had a scope and scan where they found 1 gallstone and told me my gallbladder would be best coming out. I had that done in December 2014 and got a lot worse and started vomiting and had persistent nausea, headaches and feeling unwell. I then found out I had an 8cm cyst on my ovary that unfortunately was there when they found the gallstone but they forgot to tell me! I asked my surgeon if the cyst was making me sick and he didn't know. I saw a gynaecologist during one of my many stays in hospital last year and he said it was a big cyst and should come out. However he spoke to my surgeon who advised against it due to previous surgeries I'd had. I saw a GI doc then who said my symptoms were a rare side effect of gallbladder removal. Out of desperation I went to an acupuncturist who gave me herbs and within a few weeks the sickness stopped and I felt better so I had a scan and the cyst had reduced to 2cm so I stopped the herbs and within 6 weeks all the horrible symptoms came back. I knew then it was the cyst and went to my GP who agreed that it was the cyst and sent me to a different gynaecologist. I asked my GP to check my ca125 and to also check my progesterone and estrogen levels as I read that estrogen dominance which is usually low progesterone can cause these problems particularly when you hit the early 40's. My progesterone was on the floor and my ca125 was 70. I saw the gynaecologist who told me straight away all my symptoms were from the cyst and he couldn't understand why they thought it was my gallbladder. he wasn't concerned about the blood results and recommended aspiration of the cyst even though there was septation in the cyst and I also had another cyst grown on top of the original cyst bleeding into it and it was 9cm. I had it aspired in December and they drained 1litre of fluid and thankfully when they biopsied it there was no cancer. Unfortunately the cyst refilled but was small at 2.5cm but I was still getting periods every 21 days and feeling off but thankfully not vomiting and a lot better than before. I decided to go to a specialist clinic that deals with hormone problems. They asked about my diet and what supplements I took. They recommended I take a b complex with the minimum of 50mg per b vitamin in it as they explained the b vitamins (b6) in particular are great for balancing hormones and can help increase progesterone. They also recommended dietary changes and a 28 day saliva test to see what's going on with my hormones as they explained that blood tests are difficult to be accurate as they rely on you have a regular cycle. Anyway I started the b complex and within a month my cyst which has been there for nearly 2 years is finally gone. I feel a lot better and go back for my results in July and they will recommend further treatment based on my results. it must be worth a try and might help you. I was told by the 2 gynaecologists and my endocrinologist and surgeon that the main difficulty with removing cysts is that they can come back so treating the underlying imbalance should help. I hope you feel better soon. Take care X
    • maryvee
      maryvee Acejohnston

      Posted

      Thank you for your story, I really appreciate it and I'm so glad you are doing better now. I may get some B vitamins then...they can't hurt can they!
    • maryvee
      maryvee Acejohnston

      Posted

      I have read about estrogen dominance also...have you thought about progesterone creams? I have heard that they aren't all that effective but surely if it helps with the estrogen dominance it would be.
    • Acejohnston
      Acejohnston maryvee

      Posted

      I did try wild yam cream and found that helped and also did castor oil packs too. I told my story on another group and a woman who had a 9cm dermoid cyst decided to get b complex 50 and within 4 weeks her cyst reduced to 2cm and she said she felt so much better and was so glad she tried it. What I've read and been told is that the liver can't handle the imbalance of estrogen and progesterone and the excess estrogen causes the cysts and in my case gallstones too. I suffered so much for 2 years and thought I would never feel right again but thankfully am on the right road, also try and increase your b6 food intake as it helps to increase progesterone. Unfortunately as our bodies prepare for menopause estrogen and progesterone drop but progesterone drops a lot more than estrogen causing these issues. Eat lots of greens to as they can help the liver with the excess estrogen. Even if your estrogen levels are normal once you have low progesterone it's classified as estrogen dominance. I also know another woman had 2 cysts one on each ovary that were 4cm each and she was recommended removal of ovaries and hysterectomy even though she had no problems with her uterus! She had the operation and is in surgical menopause now which she says is worse than her original symptoms! Do your research and get a second and third opinion if you want as unfortunately in my opinion doctors have different views on these things. However my endocrinologist did agree that low progesterone causes cysts and so did my GP but they both said it should all settle once we've gone through menopause. Also milk thistle and Agnus castus might help. X
    • maryvee
      maryvee Acejohnston

      Posted

      I didn't think a dermoid could reduce naturally by itself because it's filled with hair, teeth etc. 

      I will get more greens! I want to up my iron ready for surgery anyway. I wont try agnus castus at the moment as I don't know if it might increase the cysts.... no idea. Did you find the wild yam helped? I have heard its like a natural version of progesterone.

    • siulolo69910
      siulolo69910 maryvee

      Posted

      HI Maryvee an Acejohnston

      Thanks for sharing about B6. I find it funny how GP, Gynae dont check hormone imbalance as that will avoid many surgeries and pain of patients.

      I have my surgery on 10.8 and the Gynae will take my uterus and one ovary and try to save one to help my hormone as I suffer high blood pressure and it doesnt go with hormonal treatment. I havent found anyone with a good story after hysterectomy! I only found that they feel worst than before....so I am not sure about this surgery. I will try the B6 ...I have been eating some but I thinki I need more B 6 to hopefully shrink the cyst. and the endotetrioma in my sigmoid. If my bowl is normal than maybe I can wait untli my menopause because my period is regular except clotts and slight more bleeding but only last to up to 6-7 days max per month and with prayer for a miracle.

       

    • Acejohnston
      Acejohnston siulolo69910

      Posted

      So sorry to hear your suffering too. I would strongly recommend a high strength b complex with minimum 50mg per b vit in it. Also milk thistle. I took it for months and believe it helped get rid of my fibroid. I was taking a multivitamin but it wasn't strong enough to help. I'm not sure where your living but I would strongly recommend finding a good clinic like I did here in Ireland who really helped me. They also have clinics in the UK too. I have to agree with you about the surgery too. I did my own research and demanded blood tests and my GP then said yes low progesterone was causing my problem. I also attend an endocrinologist and when I questioned him he admitted yes estrogen dominance (primarily low progesterone) could cause these problems. I didn't want to take hormone drugs again as unfortunately for me steroids and then hormone drugs were definitely a big part of the cause of my problems in the first place. Also diet wise no sugar, wheat, caffeine and dairy or minimise intake. Eat free range, organic where possible and eat healthy fats like avocado, nuts, seeds and lots of veg (green in particular) and fruit. Also magnesium, zinc and omega 3's are also very important. But the b complex is vital. Xx
    • Acejohnston
      Acejohnston maryvee

      Posted

      Yes I didn't think dermoids could go either but this woman's has reduced and she feels so much better. More energy and can sleep better. Agnus castus is primarily for low progesterone so if yours is low it can help and actually prevent further cysts. I haven't tried it yet but if my saliva results show low progesterone the clinic advised me that they would probably put me on it for a few months just to help regularise my cycle. However I may not need it as the b complex is working. Some women find high strength b complex itself enough with a lot of women taking 100mg per day. I was on steroids for a number of years 10 years ago which started all this off and was then put on a hormone drug for my adrenal glands which I think contributed to my problems so I don't want to take progesterone although my endocrinologist said he would give me a prescription but he couldn't guarantee it would help. He did mention b complex to me too. I did find the wild yam cream helped and will go back on that when I finish the tests as I can't take herbs when doing the tests. I've also suffered from low iron for years and have had many infusions as can't tolerate the pills but started taking tumeric for diarrhea after my gallbladder was removed and my iron levels increased. It's also good for hormones too. X
    • maryvee
      maryvee Acejohnston

      Posted

      I did get some b complex 50 today...do you think just one tablet daily with food? Maybe it will help reduce them.
    • Acejohnston
      Acejohnston maryvee

      Posted

      Hi there oh yes start taking them today and up your magnesium intake and omega 3's too. I'm so sorry to hear you have 4 cysts but glad it's not cancer. Most definitely hormone imbalance. Sounds like you could be waiting a while for the surgery. In the meantime take the b50 and keep away from processed food as much as you can and eat as much greens and fruit and veg as you can. If you want the name of the clinic I went too just send me a pm. They have clinics in the UK too and they focus on treating the root cause through diet and multivitamins and minerals and herbs if required. May be worth considering if your in for a long wait. Good luck xxx

    • maryvee
      maryvee Acejohnston

      Posted

      I'm in London UK so if you know anything nearby I could look into it. 

      Yes I'll eat more fish and green leafy veg too. 

      I do agree with you its most likely I have a hormone imbalance and probably low in progesterone due to my age so I do want to try to help myself if I can. 

    • siulolo69910
      siulolo69910 Acejohnston

      Posted

      Hi AceJohnson

      I took vitamin b complex and milk thistle today. I am already feeling the difference with my energy and bowl motion this evening. I will keep you update. I haven't taken zinc and magnesium but have been eating healthy as you have mentioned except meat I have stopped it today and eat fish , beans etc. Maybe meat once a wk or fortnight.

      I am already believing my miracle...keep sharing your story and so does all the lovely women.

      Take care

      God bless

      Lolo

    • Acejohnston
      Acejohnston siulolo69910

      Posted

      Great to hear this. Hopefully this is the start of your recovery. Also you may pee a bright yellow colour and that's just the b complex. As its water soluble anything extra you don't need you pee out! There's no other side effects. Also the clinic advised me to eat free range or organic meat as normal meat can be pumped with hormones which makes things worse for us. Aldi do a good and cheap range of free range chicken and organic mince which I've had and it's perfect. The other thing they recommended was legumes but in particular split red lentils so I add a tablespoon or two when in making spag Bol or pasta sauce or curries. I'm away at the moment but when I get home I'll have a look at the sheets they gave me with all the information and if I've forgotten anything I'll post it here! Also read up about xenoestrogens as they spoke to me at great lengths about that and that was really an eye opener for me! Take care and I hope this all helps you xx

    • siulolo69910
      siulolo69910 Acejohnston

      Posted

      Hi Acejohnston

      Thank for that information, I have tried to eat organic and fish recently. I am in New Zealand. I will look for red lentils . And will find out about Xenoestrogens. As i am typing I can have my pants in the middle of my abdomen for a while I put them almost level with my hip to prevent pressure that cause discomfort and slight pain on my stomach, side and lower back.

      Yes please when you can let me know more.

      With much appreciation.

      Thanks and God bless

      Lolo

       

    • siulolo69910
      siulolo69910 Acejohnston

      Posted

      Hi again Acejohnston

      Just rereading the above post and realise you mentioned adrenal gland. My ultra sound in Oct last year found a small cyst on one of my adrenal galnd. My GP said it isnt significant, my gynaecologist thinks I need to check with renal specialist. It is difficult to see a renal specialist as my GP think it isnt significant. However I have been having high blood pressure and have been on and off medication due to bad side effect. I am on candestar at the moment as I need my bp down to normal prior my operation in 10.8.

      If you dont mind share if you had a cyst on your adrenal gland? Did you have high bp?

      xx

      Lolo

    • siulolo69910
      siulolo69910

      Posted

      Hi Acejohnston

      It's been a while since my surgery on 18.8.2016. It is a miracle that I am recovering ok with mild pain todate with stoping pain killers  few days post discharge. To cut a long story short the surgeon who did my bowl resection was a surgeon I havent seen before in my follow up visit. I am in the process of collecting all my documents and photo and speciment just to ensure they match as I was disappointed with the unexpected surgeon who did my bowl.However they said he is competent. I made a complain on my second day recovery when I found out that a different surgeon did my bowl. And I felt that complain made my experience at the hospital a not good experience. However GOD miraculously helped me to recover fast within 4 days I am at home. I wished stayed cause I was worried that I hadnt had a bowl motion since I was allowed to eat post surgery but I didnt  felt like eating until the next morining of my first day post surgery cause I felt that I need to eat to gain energy as I felt weak. The surgeon assured me that I should be fine with my bowl. I told her that my stool normally hard regardless of eating veges and drinking heaps. Should I have laxatives , she didnt recommend any laxatives but said it should be alright . I had my bowl open harder stool than before surgery but they came out with no bleeding after a long waiting and squading position helped plus increase walking and drinking. I still have issue with hard stool and my GP suggest lactulose but i declined cause I want to try natural , more walking and water. My other issue was pain that increase slightly when passing urine and on and off sligth fresh blood discharge once a week , fresh blood stain nearly daily and progress to some creamy spot on toilet paper. I went last wednesday to see my GP. He tested my urine and found blood and white blood cell. He gave me cephalexin (antibiotice 500mg) I just found out the dose on the second day of taking it due to many side effect, constant headache, weakness and lying all day in bed the second day, some stretching pain on my right chest, chill. I called the nurse the afternoon of second day to tell my GP about my side effect cause I didnt want to pay money just to see GP about side effect. Nurse suggested to stop taking antibiotic, my GP should call me that afternoon asap cause he sent my urine to lap for test. GP texted me the next day in the afternoon. He said the urine test found no infection and that he knew I had stopped taking the antibiotic. I couldnt text back and found it funny that he tested my urine and found blood and white blood cell and the lab found none? I wonder if he really send it to lab or not? I will find out when I ask for the result of my lab test. By the way , to date I am really listening to my body and eating organic food, veges, no sugar and walking as much as I can . I dont have pain that bothers me to take pain killers. I rarely feel pain, just my left leg feels tired after a long walk. I have had a nearly 30 minutes walk around the block and one rest. I feel I am slowiy improving. Not to mention the prayers of my church and pastor and his wife. I went to church last night cause I got tired of staying home for two weeks. I am planning to try driving this week to watch my son's game. My experienced in the hospital with some nurses , surgeons and senior staffs who surround me while I was recovering mode was nasty in my opinion. But my God promise in the bible that he wont leave me or forsake me....my battle is his battle and I credit it to my faithfull GOD. I hope my complain help the surgeon never to lie to me and my family. I hope to see the gynae and bowl surgeon in six weeks where I can find out more why the switch in my surgery. and why the lie rather than just explain to me prior surgery. I am still praying for miracle full recovery as I have no trust in surgeons and medical staffs. I am not a doc but I have learned that people like us need to keep searching and listen to our body , eat healthy and most importantly it makes a difference for me believing in the God of the bible. It would have been very ugly if I didnt have GOD on my side. I will update after six weeks on how my appmnt go if I get on as I felt the surgeons didnt want to see me after I complained.

      How have you been  Acejohston ? I havent taken the B complex and milk thistle yet . I just thought to wait for my body to do its self healing as I am eating organic and healthy and then finish up my tablets that's left. Did you have a surgery and continue taking b complex and milk thistle after surgery? Would like to know.

      take care and catch up later

      x

      Lolo

    • Acejohnston
      Acejohnston siulolo69910

      Posted

      So glad to hear your over your operation and all went ok. Take it slow and very easy. It takes time to recover from any surgery but bowel surgery can take 6-12 weeks. I had a large bowel resection 22 years ago so know what your going through although I had an ileostomy bag for 18 months and 3 surgeries but I recovered well. Well I started bleeding and spotting about a week after my last period which was on day 40 of my cycle and had the light bleeding for nearly 5 weeks. I went to the clinic and got my results from my saliva tests which showed I had low progesterone, estrogen and testosterone and they suspected I was in menopause and told me to go to my doc and request a fsh blood test to see if I was near or in menopause. Well I had the test and my GP rang the other day to confirm my bloods are in the post menopause range and that this has been what's caused my cysts and other issues all this time due to fluctuating hormones. I asked her why this wasn't picked up or checked in the last few years and she said that due to my age (44) it wouldn't be something that would be checked as its classed as early menopause. She told me nausea, headaches and irregular periods and all the other symptoms I've had are common in menopause or in women coming near to it. So thanks to the clinic I know now what's been happening to me and know it will get better once my hormones finally level out. She mentioned hrt or progesterone but I wouldn't take any hormone meds as I don't do well on them. The clinic are going to recommend some herbs and have already recommended menopause supplements. I don't feel great but no cysts thank god just my body trying to adjust to menopause. I think of you often and hope you recover fully soon. I'm still taking the bcomplex and the herbs the clinic are putting together will have milk thistle to help my liver deal with the hormone fluctuations. Take care and let me know how your doing. Xx

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