Large cyst is making me crazy. I feel like I'm in hell.

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Hello everyone this is my first post. I apologize that this post will be very lengthy but there's a lot to go over. I am hoping that somebody can relate to what I'm saying and give me some idea of what might be going on with me.

I was recently diagnosed with a large cyst in my right ovary. It measured 5 cm the first time the ultrasound was performed. After the first ultrasound I became more and more ill with a lot of nausea/vomiting and pain. In addition I've been having some weird behavioral issues that I've never had before . I'm seeking advice from other people that I've been through this. I still do not know what type of mass I have in my ovary.

After the first ultrasound was performed I became very frightened. I had trouble reading the ultrasound report and understanding it. I ended up having to go to the emergency room about three weeks later because the pain and the nausea & vomiting were so severe that I was having trouble functioning in every day life.

I work in a job there requires me to say all day in front of the computer and process medical claims. The pressure I feel in my abdomen is so great that I can hardly stand to be at work for more than 4 or 5 hours per day. Luckily I was already on family medical leave and so my job is secure even with my absences, but I'm struggling financially of course because I can't work the full week.

The emergency room doctor was a man and he did not seem to be taking me very seriously from the moment I got there. He advised me that there is probably nothing he could do for me at the emergency room and I have to wait and see what happen with the cyst. He was basically trying to say that you didn't want to see me or perform any testing or give me any sort of medication. I advise the doctor that that was not acceptable to me as I was so dehydrated and in so much pain that I felt the need to come to the emergency room at that moment. He eventually performed another transvaginal ultrasound and discovered that the cyst had grown from 5 cm approximately 7 cm in just three weeks time.

I contacted my Doctor Who had referred me to a specialist but the specialist was nice able to get me in until the end of June. I had this conversation with my doctor at the beginning of May. Luckily he did do his due diligence and he contacted the specialist office and requested that they get me in sooner because I was very distraught and having severe symptoms. I'm now scheduled for the specialist appointment on June 3. The problem is I I cannot function when this is going on in my life. It's not just anxiety; it's actual pain and discomfort and several other symptoms that are very troubling to me -including a massive amount of weight gain in a very short period of time.

I measure 5'2" tall and I weigh over 200 pounds now. I have never weighed this much in my life. I gained over 40 pounds in less than 6 months I was at a healthy weight six months ago (perhaps slightly overweight but I was happy with my body). I was wearing a size 6 or 8 and now none of my clothes fit me. I'm constantly feeling self-conscious and I'm comfortable in my clothes and cannot afford to buy new ones or bigger sizes. Today I actually went to a discount store and purchased the corset to wear underneath my clothing so that I'm not so obviously bloated. This is the first time in my life I've ever had to purchase Shapeware. It's depressing.

I was given some medication to help manage my nausea and vomiting and also my pain. At first they gave me tramadol but it wasn't strong enough and wasn't working. So I had to request a stronger painkiller in order to merely function A day to day basis.

However, before I was prescribed these opiates, I noticed that I was completely unable to sleep. Just a week ago, I was awake for almost 72 hours and I have no idea why. My body feels exhausted but I have this feeling inside me that I just need to keep moving. It makes me wonder if whatever is happening with my hormones is causing me to behave this way. I find myself almost an hypomanic state which is just completely out of character for me.

I do have a traumatic past and I have been diagnosed with posttraumatic stress syndrome. I have been diagnosed with depressionz and I've been diagnosed with panic disorder with Agoraphobia. In addition I also suffer from lupus and Sjogren's syndrome. I also had a bout of alopecia Areata and my hair is not growing back completely but at least it resolved itself without much intervention. So I have all of these autoimmune issues on top of this huge cyst in my right ovary.

The ultrasound reports obviously I have very little help and I probably really need an MRI done. But I feel that my doctors are dragging their feet and I don't understand why. I don't understand why have to wait and watch when I'm so miserable and acting so out of character. I don't even know what type of cyst this is- whether it's follicular, whether it is dermoid, whether it is hemorrhagic, etc. All I know is that the mass that is in my right ovary is a large cyst with solid components - a complex cyst with nodular projections and it is growing it is a fairly quick rate.

Yesterday I went to work off of zero hours of sleep. I got there at 5:45 in the morning and left after working seven hours and it was excruciating. For some odd reason my primary doctor recommended that I have my annual Pap smear prior to seeing the specialist. So when I left work and went to this appointment I undressed and everything. The doctor came in and said I don't really think I should do this exam today since you have an appointment with your gynecologist in a couple of weeks and she's going to do a pelvic exam as well. I agreed with her that I felt it was odd and I agreed that we should hold off on the Pap smear until I see my specialist and request it at that time.

Fast-forward two 12:54 AM the next day and I'm still awake. I feel restless, I feel agitated, I feel like I can't stop moving, and I cannot sleep but my body is shutting down on me it's so sore and achy. To make matters worse the pharmacy did not have in stock the anti-nausea medication that was ordered for me so all night long I've been sitting here trying not to vomit.

I'm running a low-grade fever or have been for the past week. The highest it's gone up to is 100°F. It's not a terrible fever but it's enough to really make me feel horrible and I'm wondering why I have this Fever. My mother went through menopause at the age of 32 I am 35 and the doctor I spoke with today confirm that I am not going through menopause at this time based upon my labs. In yes two years I have had two periods. The most recent was just this past April. and I hadn't had a period for at least eight or nine months.

I don't really have a specific question in mind. I suppose I am venting and just telling my story in hopes that somebody will read it and say "hey I went through that too here's what happened to me." I greatly appreciate any response or any insight because I can't continue on this way. I called the specialist office and asked to be put on the cancellation list just so I can get in sooner I'm so desperate to find a solution to this horrible problem. I know that ovarian cyst are very common but they usually resolve on their own. I've been having these symptoms for over three months it seems like it's probably dangerous at this point to keep putting off furtger care, an MRI - something! I need to know what this is -is I need to know if this is! Is it ovarian cancer? Is it just a benign cyst that needs to be removed? I just need some kind of resolution to this because it is literally ruining my life. I feel like this process is taking way too long and I'm afraid to something really bad is going to happen between now and the time that I see my specialist.

Thank you for listening and I apologize again for the length of this post but I have nobody else to talk to. Thank you again

0 likes, 3 replies

3 Replies

  • Posted

    Hi, I'm so sorry you are going through this. Obviously only medical professionals can tell you exactly what is going on in your body, but I found it very reassuring to read all the statistics around ovarian cysts, with well over 90% being benign. There are no guarantees, but this does put things in perspective. By the time they operated to remove my cyst it was over 30 cmsx28cms so I know what you mean about pressure, it was very uncomfortable at times. Have you tried sleeping slightly propped up, I found that helped. For pain I just stuck to paracetamol and ibuprofen, but also ate smaller meals. In terms of tests they did an ultrasound and an MRI before my op. When they removed the cyst they also removed my ovaries and did an hysterectomy. In terms of time frame it took from visiting GP on 7 December to surgery on 30 March, during which time it did continue to grow. Please try not to worry, and take the advice given by the medics. I am sure they have your best interests as their priority. Good luck. X
  • Posted

    Hi Lynn, you really are going through it, ovarian cysts are extremely common and as Yorksgirl has said 90% of the time they are benign.  Unfortunately everybody has different symptoms even with the same type and same size cysts, everybody is different, what could give one person agonising pain could just be mild in someone else.  Fear and worry also play a MAJOR part in making symptoms feel worse than they are. 

    It is sites like this that helped me, it is good to vent your fears and frustrations and there is always someone who will reply.

    I send you big hugs and love x

  • Posted

    You poor thing! No one should have to go through this type of agonizing pain and suffering. It may be time for you to "put your foot down". Is there someone close to you, like a family member, who could assist you in contacting the office and telling them this has become an emergency situation? Gaining that much weight, the nausea and vomiting and pressure/fullness you describe is worrisome and should NOT be taken lightly. You did say you suffer from anxiety, PTSD and depression so perhaps, & only perhaps, your doctors are thinking your symptoms are not as bad as they really are and that it is your anxiety causing your discomfort. Please note, I AM NOT insinuating that this is the case, just that I think clinicians can sometimes gloss over things when patients suffer from these types of problems. If you feel that you are unable to work, unable to sleep and unable to function-this seems like a good reason to insist on some concrete answers (or go find another doctor ASAP).  Again, I am so sorry you are suffering. Please keep us abreast of your situation.

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