Aa
So confused what to do
I have just had my follow up appointment, after being hospitalised in July with severe pelvic pain, where a 6.5cm simple cyst was found on my right ovary, and 4cm cyst on my left. My CA-125 was elevated at time of hospitilisation, but is apparently in the normal range at the moment. My latest ultra sound has shown that the cysts haven't grown in the last 8 weeks, but have not shrunk either. I have been experiencing excrutiating pain on and off for the past 6 months, and basically live each day on painkillers. I have had multiple abdominal surgeries, including appendectomy, 2 x C sections, hysterectomy and 12 months after that, a major hernia repair for multiple incisional hernias and adhesion removal caused by a MVA so close to hysterectomy. My GYN has told me that basically my pelvic area is a total mass of adhesions, with most of my organs binded together. He is not sure if the pain I am experiencing is caused by the cysts, or the adhesions, but wants to remove both ovaries, but as we all know more surgery causes more adhesions. He said the operation would require two surgeons because of the complexity of my pelvic area, and as he would also have to remove a 15 x 8cm gortex mesh that is screwed over my whole lower abdomen. I am so confused as what to do, as he can't guarantee any of this will help my pain, and could in fact cause more. I feel I have a strong pain threshold, but the pain I've been having knocks me flat, and no painkillers can stop it. It is really interfering with my life, as I work fulltime and have a 10 yr old daughter and a very supportive husband. I have to go back in early December with a decision about what I want to do, but I am so worried that it is only going to leave me in more pain afterwards if I get more adhesions, which is a given any way, but then I worry if I just try to live with it, the cysts could become cancerous, as we my mother died of colon cancer. He also said to think about the consequences of menopause after surgery, but I feel at 46 its probably going to happen in the next couple of years anyway. Any suggestions???????? I'm going crazy with pain.
Yes, the pain can be relentless and very strong. I was on percocet's before my surgery. If you are having a marked increase in pain do go to the ER - you may be suffering from torsion. Please let us know how it goes.
Can someone tell me if its normal to be experiencing pain each and every day. I am only three days past my Gyn appointment, where we basically decided to wait another 8 weeks to make final decision regarding my surgery, but I truly believe I won't be able to stand this pain that long. I am on endone 5mg for pain relief, plus neurofen. Today I have had at least 6 endone and at least 6 neurofen to try and dull the pain, but it just won't stop. Its such a deep strong pain, like nothing I've ever felt, and I have had a lot of types of pain but nothing like this. My son dropped my 4 month old grandson over to me to stay the night (my request) and when we were outside saying goodbye, with me holding my beautiful grandson, I thought I was going to pass out with the pain which was radiating from my pelvis, right up my whole body. Is this what the pain of a 6cm "simple cyst" is supposed to feel like??????????? It's got to the point where my shoulders and neck are just aching constantly, with the strong pain in my right pelvic area, right hip and lower right back. Should I just go to ER, as my surgery is going to be through the public hospital.
Thank you both for your replys. I just burst out crying in the doctors surgery, because I didn't know what to do. I do know that I have always had adhesions and they have never caused me the pain I am experiencing now, just the odd tug every now and then. I'm not a sook, but the prospect of thinking about more days cramped up on my bed with only my heatpak, just overwhelmed me at the time. If I knew they would give me proper pain relief, I would go to the ER, just so they would realise the kind of pain I am in, but after my last experience in hospital, I tend to just stay home and self medicate. They didn't even have a heat pak in hospital, and morphine doesn't even touch the pain. I have an lovely GP, who I will make an appointment to see, and go and talk to him, and get a referral to another specialist for a second opinion. The risk of cancer really does still linger in the back of my head, and I have lost a couple of girlfriends, who always told me, "don't let them tell you its ok, unless they have done a biopsy". Thanks for letting me vent my frustrations. Apparently my surgery would be classed as high risk to, that is why GYN wants another surgeon with him.
And I would not be waiting until December to make a decision. They will then have to book it and you will likely be having surgery in the new year. That is a long time to live in such pain and worry. I say earlier is better. If there is any risk of cancer you don't want to wait.
Oh how I feel for you. I am in a similar boat.
I have had surgery for 2 ectopic pregnancies (bikini cut), 3 intestinal surgeries (remove large colon, create J-pouch, close ileostomy, and then my cyst surgery last year. Because they were worried about adhesions and hurting my J-pouch, my gyn had a general surgeon in with him. Because surgery is risky for me I asked them to give me a total hysterectomy but was disappointed to find out they didn't. They had only booked 3 hours for my surgery and once in the adhesions were so bad that all my internal organs are glued together. They only removed the 16 cm sized cluster of cysts, my ovary and tube due to time and concern on hurting something. Now I worry about any future issues with my remaining ovary and fibroid.
I can definitely tell you in my case that the pain was from the cysts and not the adhesions. I felt tremendously better immediately after surgery. I do get twinges from my adhesions and have started ball rolling to limit them (look on the health pages - top right - and you'll see a posting on adhesions). Don't ever let a doctor tell you that cysts, even small ones (and yours aren't) don't hurt. If it were me I'd be having the surgery and then you can work on the adhesions afterwards. With the clean up from surgery and then doing ball rolling you may be in really good shape. And the risk of ignoring the cysts must be taken into account, let alone your pain.
I have had surgery for 2 ectopic pregnancies (bikini cut), 3 intestinal surgeries (remove large colon, create J-pouch, close ileostomy, and then my cyst surgery last year. Because they were worried about adhesions and hurting my J-pouch, my gyn had a general surgeon in with him. Because surgery is risky for me I asked them to give me a total hysterectomy but was disappointed to find out they didn't. They had only booked 3 hours for my surgery and once in the adhesions were so bad that all my internal organs are glued together. They only removed the 16 cm sized cluster of cysts, my ovary and tube due to time and concern on hurting something. Now I worry about any future issues with my remaining ovary and fibroid.
I can definitely tell you in my case that the pain was from the cysts and not the adhesions. I felt tremendously better immediately after surgery. I do get twinges from my adhesions and have started ball rolling to limit them (look on the health pages - top right - and you'll see a posting on adhesions). Don't ever let a doctor tell you that cysts, even small ones (and yours aren't) don't hurt. If it were me I'd be having the surgery and then you can work on the adhesions afterwards. With the clean up from surgery and then doing ball rolling you may be in really good shape. And the risk of ignoring the cysts must be taken into account, let alone your pain.
That's not an easy decision to make. I completed menopause naturally at age 46 but it is considered on the young end of the time scale. All the same, if I can complete it naturally at that age, it's not an unreasonable age to lose ovaries.
It seems the surgery is a worthwhile option, but it requires the most skillful surgeon you can get. I would be asking for a top gynecologist/oncologist as the primary with your gyn assisting. I don't know enough about adhesions and the complications they cause but I would be asking if they feel they can clean up some of those problems along with the ovary/cyst removal. If this is done correctly, it may be the final surgery you need done on the pelvic area and the one that corrects past issues. Doing nothing is not helping you and those cysts are doing you no favors.
It seems the surgery is a worthwhile option, but it requires the most skillful surgeon you can get. I would be asking for a top gynecologist/oncologist as the primary with your gyn assisting. I don't know enough about adhesions and the complications they cause but I would be asking if they feel they can clean up some of those problems along with the ovary/cyst removal. If this is done correctly, it may be the final surgery you need done on the pelvic area and the one that corrects past issues. Doing nothing is not helping you and those cysts are doing you no favors.
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