Phantom pains?

[JessRae]

I will of course be discussing this with the doctor, but i dont see him until next week.

Its been almost 4 weeks since I had surgery for the removal of right ovary and tube due to a cyst that to my and my family doctors understanding, caused my ovary to collapse. (cysts was only 5cm at surgery, but the ovary wall was less than 1mm thick and transparent over the cyst)

I've started getting pains on the remaining ovary for the last week ( on the 10th, which was ten days since the last day of the bleeing post surgery, that lasted 6 days, i had signs of what i believe was my body thinking it was ovulating) and i know that ovary has been prone to having simple functioning cysts, that clear up when i go on birth control, as long as its 3 months in a row, the regular 21 days at a time doesnt shrink the cysts. (which my dr would like to ideally wait until i get a period before going back onto the pill)

But with my right side, I've had more pains, now i know that phantom pains can and do happen, but im wondering how many of you ladies have gone through that and how long it lasted?

The pains, are sort of similar to how it was pre surgery, like right now im getting a pinching pain where my ovary used to be, down to my groin and hip. I'm still going to discuss this with the doctor, and keep track of the pains, i know when i move certain ways i get pains in both sides and its very uncomfortable. And i'll be pushing the issue to further investigate incase it is not just phantom pains so i dont want to totally just assume, because im not sure if phantom pains would wait so long to show up or if it would be more of a right away thing?

Im still having the swelling, I cant stand not being able to wear my pants, the hot flashes are a joy, and my hormones... omfg. i cant wait for things to return to normal, and the exhuastion.

I felt great my first 3 weeks post surgery, had lots of energy was up walking when i felt good, but still making sure i rested too... now, im lucky if i go to the store and come home and feel like i need to sleep.

Any thoughts, suggestions etc would be lovely ladies. Again I will be discussing this when i see the dr March 9th.

[old_before_my_time]

Welcome to the community. Thank you for sharing your experience. I am sorry that you still, this many years post-oophorectomy, have pain. I am so glad to hear though that you were able to conceive with the one ovary!

[Downachick]

And to answer your question yes you can still have children with one ovary. I am a mother of a beautiful 5yr old boy. I'm not going to say it is easy to have one my husband and I tried really hard for 2 yrs and finally I became pregnant. It was like a job I had to calculate my period days, take ovulation test, and plenty of well you know. Keep your head up because you can have a child but you have to really want it like we did!!!

[Downachick]

I was reading your comment and I had to respond. I was wondering if you could have phantom pains as well? I had my left ovary removed when I was 4 yrs old due to a cyst that had benign cancer cells on it. My mother decided to tell them to take it out because she never knew if it would turn into cancer. I have pains in my left side all the way to my groin and sometimes it gets so bad that it will stop me in my tracks for a minute or two. I am now 26yrs old and the pain still comes and goes. I was wondering what did your doctor say about your pain?

[JessRae]

Well and the most frustrating part, he hasnt not cleared me, or cleared me for work! UGH! So without a dr note extending my time off, i might not get more of my Medical leave paid for, etc. This is just becoming so stressful with everything else going on in life. *sigh*

I know I shouldnt take what he says to heart, but I know to some level, he is right, I do need to lose the weight, and I am more than aware of that that anyone else ever will be, after all, you are you're worst critic. Its just having the energy to do so, and also not being in pain! Today the pains have been much worse but i am having bleeding to, so I am assuming this would be my period, and holy crap the pains on my right side today are sooo not comfortable... He wasnt much help at all with the fact that my pains came out of nowhere 3 weeks post op. just that I should expect pain. Well thanks for that Captin Obvious. I wasnt expecting to stay pain free, I just figured it would be sooner thats all. Oh well, I'm taking it easy, but also still trying to get back into day to day life. I'm also trying desprately to look for a new job because I want more stability and dont want to deal with the crap going on at work! Lol. I expected it could take a while, I think I'm kicking my own butt cause I think I got my hopes up too high cause I felt so great at first, so I need to remember this can happen and I guess can also be fairly normal. I will be going to my own family doctor if things persist for sure.

[hopeshell]

I am so sorry to hear that the appointment went poorly.  It is terrible when doctors assume things and don't really listen.  Don't take his negative comments to heart.  Sometimes when doctors don't know the answers they blame you and brush it off.  Only time will tell if the symptoms continue.  If it persists, then I would see another doctor.  I know it took me over a year to feel stronger after my surgery! Hang in there!

[JessRae]

So im home from my appt. That was useless. I spent more time in the exam room waiting for him than I did speaking to him. He looked at the incsion, its healed wonderfully on the outside. Of course it is. I already knew that. He didnt really listen much the hot flashes, hormones etc. Says its just going to take time and I need to get back on my borth control, same for the pains on my left side again, im likely getting another cyst, that needs to have the pill again, so that should help regulate me a little more. He was just so frustrating. I told him how good i felt the first two weeks, and how come week 3 and on, ive crashed and just am exhuasted etc. He asked me if im starting to exercise. Yes, i am... im going for my walks, im doing what housework i can etc. im still trying to keep it low impact for the abdominal muscles. He didnt seem to happy about that, and wants me to start doing more, and basically started passing a lot of this off on my weight... Yes i know im a bigger girl, and i need to lose weight, and i want to. Basically he just cut me down and made me feel like crap about myself. He told me im going to have good days and bad days.

Life is crazy at the moment, so as of right now, im stil taking more time off of work, and i will be looking for a new job as well cause i dont wish to stay employed where i am right now if i can at all help it. And also taking the time off to work on strengthening myself. cant do much good when i cant left a big pot of water, which is no different than what i do at work, just need to lift it 10-20 times in a day more than what i am right now.

[JessRae]

I have also decided that i am going to request an ultrasound, just for ease of mind about any cyst that could be forming on the left side as its prone to them aswell, and any discomfort im having on the right side. And i will push the issue about blood work. Im not leaving this alone and he wont ignore me on this. He has two choice, deal with me as a patient and answer my questions and concerns, or I can get my family doctor involved again and she wasnt too kind about him disregarding me so quick last time.

Ive been starting to wonder if we were wrong stopping the birth control and if i shouldve started it again right away, or continued it the whole way through ( though i had a nurse concerned because the birth control pill i am on, YASMIN 21 day, is apparently one of the ones that make you at higher risk of blood clot etc so she was glad to hear i had stopped it after surgery for at least recovery and when i wasnt as mobile)

I just remember how i was on a birth control that were the wrong dosages for me, and how much of a mess i was and the hormonal imbalance it caused, and it does seem similar to this, so i am hoping (fingers and toes crossed) that this is all it is.

Having children is HUGE for me and my family. In my family, women had these problems( my grandmother was also 40 yr old when she had to have a partial hystorectomy(only remove of uterus) due to it collapsing), but they already had kids by my age... My mom was 21 when she had me, and 25 when she had my brother, though most of these issues skipped her, my grandma was 19 when she had my mom, and she had a lot of problems like im having now etc. Its just so discouraging. Having kids is everything, i was the 4 yr old that already know i was going to be a mom, not just playing house as a kid.... even when i was playing house, i was still stuffing things up my shirt to be "pregnant" and also "give birth" when i was younger.

Its a very hard time right now, ive had a lot of stress the last 9 months. And now im going through this, at the same time my best friend is pregnant. *sigh*

Thank you sooo much Shelly, you're help has been amazing. Cant thank you enough.

[hopeshell]

Hi again,

I am so sorry that you are so young and going through this.  I think it is a wonderful idea to have your mom go with you.  It is so hard to process all the information on your own.  Make list of your questions.  It is so easy to forget what to ask when you are in with the doctor.  

Your family history does mean something (in my opinion) in regards to how vigilant you will need to be about checking your health.  But, at your age, you absolutely should be fine trying HRT.  I went with my best judgment and the opinion of my oncologist about not taking hormones.  But, I have wondered!  The most important thing for you is to make sure your ovary is still functioning well so you can preserve your fertility.  Your symptoms leave me concerned that your estrogen is too low.  So, you must press forward and insist on hormonal tests.

There are some studies which have shown that HRT does NOT affect women in a negative way if they had ovarian cancer in the past.  It is very controversial and very hard to make a decision when you are faced with early menopause and HRT.  I am still not sure I made the right decision.  All I could think of was being there for my kids and I chose no HRT. But, I am almost 4 years out and I have many, many health issues I probably would not have had if I had taken HRT.  Studies have shown my overall lifespan is decreased even if the cancer never comes back because I have no hormones and such an early menopause.  In the beginning of my journey, I thought that I would be the exception...that osteoporosis, weight gain and pelvic floor collapse would not affect me if I took the right supplements and stayed on top of it.  But, I have had all of it and I am only 40 years old now.  I am so discouraged about how much lack of hormones has affected my body.  I can't even imagine how it would be at your age.

Life has many risks and we have to weigh them and try to pick the best option.  You want to have babies.  So, you need to be sure to get all tests NOW and freeze eggs if necessary.  With your uterus, you can still carry your own babies to term.  Maybe it isn't how you pictured it.  But, thank heavens there are options for those of us who do end up having issues with our female organs.  

Try to keep in mind that you have very low odds of your family history having an effect on your health.  Always keep it in the back of your mind and be sure to always get timely checks.  But, it is in no way a given that you will have an issue!  You have been given a set of circumstances out of your control!  It sounds like you have done the only logical course given the situation.  Hang in there! :)

Shelly

[JessRae]

I will request hormone tests and start charting my symptoms the best i can. Thank you. I'm just so frustrated. This was supposed to be done and over and dealt with once the ovary came out, i shouldve been able to bounce back to normal and live normally and ont in constant pain anymore :( I'll try to get in to see the dr before next week and I wil lbe discussing with him, i'll have my mom with me as shes also been seeing my mood swings etc.

I know you've mentioned that you've had ovarian cancer, and the tumor was fed by estrogen... My grandma is a breast cancer survivor. She was diagnosed in the summer of 2003, she was early 50's. she had to under go radiation and she lost 12 of her lymphnodes as well. They believe it was due to her patch she was wearing and like you, it fed off estrogen, so due to that being in my family history and now actually knowing of this ( I love my family.. they wait to inform you of thigns when you need it, not getting it all out when you ask for it....) will they even take the chance of HRT with me?

I'm just so frustrated. other than mood swings and hot flashes i dont think ive had any other problems. I have insomnia, but thats been since before this all started, i havent had a decline in libido at all or anything else like that. So i will chart it still for sure.

I am so hoping that this is just a hormonal imbalance. the hot flashes are nothing new, i was getting them even before surgery, the last couple months at least were the worst. Its so frustrating.

I was devistated when it came to needing surgery the first time and being told i had cysts, the thought of not getting to have kids was heart breaking. The second go around when the cyst returned, and i went home and researched the surgery, it seemed like the best option, and that was before we even know I absolutely needed it.. .now.. im not so sure. I just want to be able to have kids, but if its worst case scenerio I cant afford to harvest and store eggs etc. *sigh* Oh well I'll keep a diary and see what the doctors have to say!

Thank you so much for your help, being able to talk about it with people who understand a little more certainly helps. Without this site I think i wouldve gone mad. lol

[hopeshell]

I am so sorry to hear your symptoms. But, you need to see your dr. right away and find out what is happening.  I do recommend charting your symptoms and insisting on hormone tests.  You are way too young to be dealing with this!  :(

Usually, the remaining ovary kicks in and takes up the slack for the one that is lost.  But, with your symptoms, I would not take a chance!  You need to insist that you get tests and answers soon!

Fertility preservation is possible if you catch it before it goes too long.  Odds are still with you that it is just a hormonal imbalance and not early menopause.  But, you really can't afford to wait and wonder!

Please let us know how it goes! You will be in my thoughts and prayers!

Shelly

[JessRae]

I'm only 22! I only lost my right ovary.

For me, i know due to extensive dental surgeries etc I have had phantom pains etc.. but ive never had an organ removed, so i dont know how common it is. I'll mention this to my gyno when I see him, and if I am still concerned and he's not dealing with it to the best i think he should be, I'll be going to my own dr and requesting things for sure. She'll get on his case again and make it happen. My concerns are that if it isnt phantom pains, what else could it be, adhesions, something trying to grow when there is nothing there to attach to?

I know through being on different birth control over the years I had some major problems with one in particular causing a hormonal/chemical imbalance and i was a mess... .So I'm wondering if its effecting me more losing the one ovary as my body doesnt react well? Up until now I've been healing okay, I had tons of energy the first 2 weeks post surgery, was up, moving around and felt over all wonderful. Way easier than I though. since the start of week 3 though, I've found I'm just exhuasted, I still have hot flashes, the other day i had one so bad I actually went outside in the freezing cold to just try to cool down! I get a few of them a few times during the day. The emotions, and the hormones, I was expecting to be off, I just hoped that things wouldve started getting better as recovery went on.

I cant be certain when I will get my period. Before surgery, I was only every 3 months due to birth control to keep cysts away from my left ovary. I was 2 days into my 2nd month pack when i went for surgery and we stopped them. So I am not sure if it was a period I had, or if it was just post surgery bleeding.... It started the day after surgery, and went on for 6 days, much like a regular period for me. So if it was a period, and my body bounces back on track, I should be getting a period in the second week of March (normally when on the pill, i finished on a sunday, and by the thursday-sunday latest, i would have my period, and start my pack again that monday)

See... when it came to HRT, my grandma(in her 50's) swears not to go onto anything, lectured me about it. She never gave me reasons as to why not, just dont do it. (She is a breast cancer survivor, not sure if thats any connection?)

Could this be surgical menopause?! Is it only temporary or is this really what i'm going to be dealing with? I've already had the fears of not being able to have a child due to the cysts, but now having the ovary removed, my doctor was sure i would bounce back and this would allow me to still have the hopes and dreams of having a child.

I wonder if I shouldnt start charting the emotions, mood swings, hot flashes etc? I had hot flashes start within 12hours post surgery... and emotions... omg. the first night after surgery was the worst, then i had better days, and then sometimes it gets worse.. i know a part of it could be stress, but i just dont remember being like this pre surgery.

If the left ovary isnt functioning properly than i wonder what it was earlier this month when i had signs that i was ovulating(or my body believing it was??)

[hopeshell]

Is your right ovary the only one you lost...or did you also lose your left?  It sounds a lot like menopause and I had that after I had both ovaries removed.  Even if you only had one ovary removed, it sometimes is the case that the remaining ovary quits functioning correctly.  The phantom pains were not as much of an issue for me.  You really should call your dr. and perhaps get an us to be sure all is well.

If you are having hot flashes, it is a sign that your estrogen is not enough.  You will need to let your doctor know about this. If you can take HRT, then it is best to start it right away.  Surgical menopause really stinks!!!  It really won't get better without HRT.  If you plan to wait it out and go through menopause, then it can take quite a bit of time.  I had issues for a year and a half after my surgery.  But, if you can take HRT, then see your dr. as soon as possible.  I have done much research on HRT after surgical menopause and truly believe it is the best option if you can.  I couldn't take HRT and now 4 years later, I have so many health issue from the early menopause!  I hope you find some answers soon!

Shelly