| Author |
 Topic  |
|
|
mala
Hong Kong
774 Posts |
 Posted - 11/19/2013 : 07:07:45
|
I'm afraid there may be a little too much info but there is no other way so here goes.
For exactly a year now I have had symptoms of burning after I pee, not during, but after. At first in Dec 2012 I thought UTI so I went to the doctor , they did a urine test & it came back normal. It would get better & then come back so I went again in Jan2013 - again no infection. In March I saw a gynecologist who thought it might be some vaginal atrophy & gave me some creams to use. They didn't do much but at least it was bearable. She also did a scan which showed 2 fibroids, one the size of a tennis ball and another around 2cm. This I knew already.
Pain got worse. In May I went back to her & she did another exam & came to the conclusion that the fibroids could be the reason & referred me to someone whose speciality is keyhole surgery for complicated cases. I say complicated because 15 yrs ago I had around 7 fibroids removed from my uterus the largest being around 11cm. Becoz of the nature of the surgery it is highly likely that I have a lot of adhesions.
So I went to the surgeon who did another scan. He actually showed me on the screen that when he moved my fibroid, it was also pulling on my colon so he too confirmed that they needed to come out byt this time it would be a hysterectomy. I had thought of doing the surgery in Sept but my mom was not well & then I had a trip planned so I thought I'd get in done this coming Dec.
In the meantime I got worse & 2 weeks ago at around midnight I felt severe burning after peeing which was unbearable so my husband took me into emergency where I was checked. I was sent home with a ton of pills & antibiotics which were too strong and ended up staying in hospital for 4 days. At the hospital another gyne did an exam & every time he pushed on my pubic bone it would hurt like hell & he said he didn't think it was atrophy but he wasn't sure it was the fibroid either. The urologist did a cystoscopy. CT scan & ultrasound & she said no inflammation in the bladder. I asked if it was IC & she said no. I am now on anti inflammatories which aren't really helping much. I have lower right abdomenal pain which is where the fibroid is located & the burning after I pee is still really bad.
I am reluctant to think this is TMS but would sure like to hear your thoughts.
Thanks so much
Mala
"It is more important to know what sort of person has a disease than to know
what sort of disease a person has." ~ Hippocrates (460-377 B.C.)
Mala Singh Barber on Facebook |
Edited by - mala on 11/19/2013 07:09:24 |
|
|
njoy
Canada
188 Posts |
Posted - 11/19/2013 : 19:10:49
|
Wow, Mala, good to see you are out of hospital and back on the computer. That's some sad story you've got there. I can't possibly, of course, offer an opinion about your situation but I sure do empathize.
All the best. You are a brave lady.
*****
"It's worth considering that tms is not a treatment but rather an unfolding of the self, and a way of living as an emotionally aware and engaged soul." Plum
|
 |
|
|
RageSootheRatio
Canada
430 Posts |
Posted - 11/19/2013 : 22:26:07
|
Hi Mala,
hmmm... in terms of thoughts, I mainly have some wonderings...
>For exactly a year now I have had symptoms of burning after I pee, not during, but after.
>In May I went back to her & she did another exam & came to the conclusion that the fibroids could be the reason
Is pain on peeing a common or uncommon symptom of fibroids?
Does the surgeon believe that particular symptom will disappear once you have surgery?
Have you read of any reports of others who had that symptom from fibroids which was relieved by surgery / hysterectomy?
I'm not quite sure why you were given antibiotics when in hospital... did you have other symptoms of an infection? I'm also not quite sure why you are taking anti-inflammatories? I don't know anything about fibroids, but if you have fibroids, does that mean there is inflammation?
If you have taken the antibiotics and the anti-inflammatories (not sure whether you took a full course or not), but if they didn't help, does that rule out an infection and inflammation?
Sounds like you have decided to have the surgery ? If you had the surgery yet still had pain after peeing symptoms, then would THAT mean to you it is TMS?
I've certainly had similar symptoms (although not nearly AS acute as yours were) when I've gone through my UTI / 'TMS-IC' periods ... even *thinking* about it can bring my symptoms on.
Are you still taking the creams? Does anything seem to help the symptoms? Do you think you ended up w/ a net gain or loss from your visit to the ER?
Whether it is TMS or not, whether surgery helps or not, being less mentally strained overall / happy / content / at peace etc can't hurt...
I have been very curious to know whether you thought this was TMS or not yourself, and was hoping you would post your conclusions once you had recovered from your hospital stay, but I guess you still aren't sure, either way.
I guess the usual advice is to have anything which is so concerning, checked out, which you've done. You have received a dx (fibroids) and a recommended treatment (surgery.) Has a TMS doctor definitively told you this is TMS and you do NOT need surgery?
What did you think of Ace1's ideas about why you've had this most recent 'flare-up'?
Anyway, as I said, not sure I have any "thoughts" ... just a lot of wonderings .. Seems like a conundrum and not sure how one could be SURE unless one had exhausted all the usual conventional treatments (as you are doing, short of surgery) and sounds like you will be doing the surgery to continue to 'rule out' ?
RSR
|
|
|
|
mala
Hong Kong
774 Posts |
Posted - 11/20/2013 : 03:30:55
|
Dear RSR thank u so much for taking the time to read & respond. let me reply as best I can.
quote:
Is pain on peeing a common or uncommon symptom of fibroids?
Usually pressure on the bladder can cause frequent urination. As to it causing pain after peeing all docs are noncommital. They say it could be from pressure on nerves & adhesions but they can't be sure.
quote:
Does the surgeon believe that particular symptom will disappear once you have surgery?
The two that I saw earlier believe it will help but again no guarantees & the most recent one did not think so until today. I went for a follow up & to tell him the anti inflamatories were not helping so he did another internal. He measured the fibroids & moved the fibroid & then the uterus. When he moved the fibroid & uterus I was in a lot of pain & he said that was unusual. He also remarked that since I was 5 years into menopuase that they should have shrunk a little but it would seem that they have grown some. He's worried about that and says that it may be a good idea to have them removed as he doesn't like the idea of the fibroids growing after menopause. Again he said that they may or may not be relief from pain & asked me to think it over carefully. He also said he would try to do it thru keyhole but thinks that it may be better to open up so that they can remove all adhesions & have a good look around.
quote:
Have you read of any reports of others who had that symptom from fibroids which was relieved by surgery / hysterectomy?
I have looked around and there are a few, not many whose pains seem to have been relieved.
quote:
not quite sure why you were given antibiotics when in hospital... did you have other symptoms of an infection? I'm also not quite sure why you are taking anti-inflammatories? I don't know anything about fibroids, but if you have fibroids, does that mean there is inflammation?
the doctor in emergency gave me antibiotics coz he thought I had some infection. then in the hopital I was given antibiotics before & after my cystoscopy as prevention. Anti inflams were prescribed basically for the pain.
quote:
If you have taken the antibiotics and the anti-inflammatories (not sure whether you took a full course or not), but if they didn't help, does that rule out an infection and inflammation?
I did complete the antibiotics as a precaution after the cystoscopy. the anti inflams are Arcoxia which i have been taking for 2 weeks now. It provides a litlle relief but not much. I am now scared that the pain will get worse when I come off them. The pain is especially bad when I sit & after I pee.
quote:
Sounds like you have decided to have the surgery ? If you had the surgery yet still had pain after peeing symptoms, then would THAT mean to you it is TMS?
Actually I am not certain about anything. I certainly would like for all of this to go away without surgery. I would like to avaoid it at any cost. Oh God I can't even think about what to think if the pain doesn't go away after surgery. there was a small finding in the cystoscopy, a very amall diverticulitum in the bladder which the doc said was insignificant.
quote:
Are you still taking the creams? Does anything seem to help the symptoms? Do you think you ended up w/ a net gain or loss from your visit to the ER?
I have stopped the other creams. At the moment I'm taking the Arcoxia, applying a litle bit of steroid cream which seems to make the area burn a bit & vagifem (oestrogen ) 2 X a week.
quote:
Whether it is TMS or not, whether surgery helps or not, being less mentally strained overall / happy / content / at peace etc can't hurt...
I have been very curious to know whether you thought this was TMS or not yourself, and was hoping you would post your conclusions once you had recovered from your hospital stay, but I guess you still aren't sure, either way.
I guess the usual advice is to have anything which is so concerning, checked out, which you've done. You have received a dx (fibroids) and a recommended treatment (surgery.) Has a TMS doctor definitively told you this is TMS and you do NOT need surgery?
What did you think of Ace1's ideas about why you've had this most recent 'flare-up'?
Anyway, as I said, not sure I have any "thoughts" ... just a lot of wonderings .. Seems like a conundrum and not sure how one could be SURE unless one had exhausted all the usual conventional treatments (as you are doing, short of surgery) and sounds like you will be doing the surgery to continue to 'rule out' ?
I thought about Ace's comment & really couldn't say as this has been flaring up & down now for a year. In the past I have been back to India with no such problem. Of course it made me very scared as I didn't want to end up being ill so far away from home.
You are so right about this being a conundrum especially with the fibroids possibly playing a role but again no one can say for sure which is why I thought I'd throw it out here. I was hoping that maybe someone with a similar or somewhat similar problem could shed some light. The pain is sometime so excrciating I ca't sit, stamd or lie down. I am pacing around the house like a mad woman & my poor husband doesn't know what to do.
quote:
I've certainly had similar symptoms (although not nearly AS acute as yours were) when I've gone through my UTI / 'TMS-IC' periods ... even *thinking* about it can bring my symptoms on.
Is there somewhere u have posted about this. Can u tell me more? If its too personal I could give u my email.
I am so truly grateful to you for being so helpful & thoughtful.
njoy thx for yr concern. I wish I was brave, but sadly I am not. I am a wreck!
Regards
Mala
"It is more important to know what sort of person has a disease than to know
what sort of disease a person has." ~ Hippocrates (460-377 B.C.)
Mala Singh Barber on Facebook |
Edited by - mala on 11/20/2013 04:07:57 |
|
|
|
RageSootheRatio
Canada
430 Posts |
Posted - 11/20/2013 : 14:40:47
|
Hi mala,
very quick reply at the moment (will reply to your post after I've had time to mull it over and when I'm thinking more clearly) .. but here's a link to one of my more recent posts about my "ic" / bladder issues:
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=8679
~RSR |
|
|
|
EileenTM
92 Posts |
Posted - 11/20/2013 : 18:35:39
|
Mala, I am so sorry for what you are going thru. However I have some things for you to consider. I went down this road myself back in 2004 and had a 6 lb ovarian cyst removed.
I also had fibroids in the past. In 2004 I had some mild burning which I thought was a urinary infection, but turned out to be the cyst pressing on my bladder. Even with a 6 lb cyst in my pelvis, that is the only pain I had and it was mild. However about the vagifem. That might be why your fibroids have not shrunk. Although they are a small local dose they can raise your blood levels of estrogen. That is what they did to me. Have your doctor check your blood estradiol. Also, check for side effects of vagifem. That just might be causing your burning.
Certainly worth considering. I ended up not being able to tolerate them. And now 8 years post menopause I need nothing in that category.
Good luck and i hope you are much better soon.
Eileen
|
|
|
|
mala
Hong Kong
774 Posts |
Posted - 11/20/2013 : 19:28:52
|
quote:
Mala, I am so sorry for what you are going thru. However I have some things for you to consider. I went down this road myself back in 2004 and had a 6 lb ovarian cyst removed.
I also had fibroids in the past. In 2004 I had some mild burning which I thought was a urinary infection, but turned out to be the cyst pressing on my bladder. Even with a 6 lb cyst in my pelvis, that is the only pain I had and it was mild. However about the vagifem. That might be why your fibroids have not shrunk. Although they are a small local dose they can raise your blood levels of estrogen. That is what they did to me. Have your doctor check your blood estradiol. Also, check for side effects of vagifem. That just might be causing your burning.
Certainly worth considering. I ended up not being able to tolerate them. And now 8 years post menopause I need nothing in that category.
Good luck and i hope you are much better soon.
Eileen
Eileen thx very much for posting. I have only just started the vagifem, not even a month. The fibroids were already their present size before I began. Blood tests revealed very low estrogen & becoz doc thought the pain may be due to vaginal atrophy, we started the estrogen I had discussed my concerns about the fibroids growing because of the vagifem but she semed to think it was OK.
One of the reasons my present doctor wants to remove the fibroid is that he is worried why they are still growing despitethe low estrogen levels.
I have to admit that sometimes what you read & what doctors tell you doesn't always make sense.
Can I ask if removing the cyst resolved most problems for you?
RSR I will read your posts shortly. Thx very much.
Regards
Mala
"It is more important to know what sort of person has a disease than to know
what sort of disease a person has." ~ Hippocrates (460-377 B.C.)
Mala Singh Barber on Facebook |
Edited by - mala on 11/20/2013 19:30:30 |
|
|
|
EileenTM
92 Posts |
Posted - 11/20/2013 : 20:44:25
|
Mala, My cyst was ovarian and it had its own hormonal secretions, so I was having some mood swings and oily skin which both did resolve with its removal. The mild burning also did go away, but it was not that troublesome. Due to the size of the cyst I had to have full abdominal incision.
So it took about 3 months to completely heal and I was told not drive for 6 weeks.
I did listen to a visualization tape prior to and after surgery which helped speed up the healing according to my doctor.
Since you did start the vagifem recently, it obviously is not the source of your problems.
I really did not have any other symptoms related to it. I do have tms symptoms, but they tend to be more eclectic. Hope this helps.
Eileen |
|
|
|
RageSootheRatio
Canada
430 Posts |
Posted - 11/23/2013 : 11:20:41
|
Hi mala,
I've been mulling this over a bit. (well, that, AND being in the hospital ER! They thought it might be a heart attack or "rapid beating" (can't remember the technical name) causing chest pain, but finally after hours of heart monitoring and repeated testing I think they concluded it was just stress! If this doesn't prove to me that my own various symptoms are TMS then I guess nothing will !) But back to your situation:
You said:
>One of the reasons my present doctor wants to remove the fibroid is that he is worried why they are still growing despitethe low estrogen levels.
>As to it causing pain after peeing all docs are noncommital. They say it could be from pressure on nerves & adhesions but they can't be sure.
So it would seem that your present doctor would recommend surgery whether you had pain or not, and that no doctor was really confident that your pain was caused by the fibroids or would resolve even if you did have surgery.
I guess one thing that comes to mind is that it could be BOTH. It is a fact you have fibroids. (like some people have whatever Sarno called "grey hairs of the spine.") But is that also the CAUSE of the pain? is the conundrum. And even if it ISN'T the true CAUSE of the pain, I think it was also Dr Sarno who said that surgery was one of THE most potent placebos? The pain could be TMS and certainly fear around it, thinking about it could make it worse, TMS or not ...
The (painful ... no pun intended!) is that no one knows. None of us here can know, and none of your doctors knows for sure, and even if any of us did, probably no two answers would be the same, so you would still be left with having to decide...
>I am now scared that the pain will get worse when I come off them.
Yes, it's a catch-22 isn't it? We are scared of the pain and want to help ourselves, but the pain isn't totally resolved even WITH the meds, but we want to hang onto whatever relief we can find, and are AFRAID to let that go and yet the cycle of fear doesn't help. (I did think of you when I was lying in my ER hospital bed and shivering from the fear. I just let my body panic and did my breathing and mantra-saying and I think all that did help.)
It seems that the antibiotics would have "ruled out" an infection and the anti-inflammatories haven't helped that much and I guess the creams weren't a solution for you, either. Hmmm... so can you "cross those off the list" ? Antibiotics/infection; inflammation, creams.
What else can you cross off the list ? Saying a lot of affirmations? Deconditioning? Journalling? Therapy? Deep healing work? (ie bottom up) Superficial healing work? (top down), Reading books? Did you ever try Scott Brady's Pain Free for Life Program? that's one program always on my (reserve) list that I've never properly done. I guess I always thought that I would give it a serious go for 6 weeks before I did anything drastic, like surgery.) Has "reducing strain in your life" correlated w/ any flare-ups/ flare-downs?
Has any doctor prescribed simple HAPPINESS? !
>Actually I am not certain about anything. I certainly would like for all of this to go away without surgery. I would like to avaoid it at any cost. Oh God I can't even think about what to think if the pain doesn't go away after surgery.
I am struck by these three things you wrote:
>Oh God I can't even think about what to think if the pain doesn't go away after surgery.
>Of course it made me very scared as I didn't want to end up being ill so far away from home.
>I am now scared that the pain will get worse when I come off them.
The fear and desperation sounds clear in your voice and I believe that makes perfect sense by the intense pain you describe:
>The pain is sometime so excrciating I ca't sit, stamd or lie down. I am pacing around the house like a mad woman & my poor husband doesn't know what to do.
The drive for sheer RELIEF is intense. Do you have any (pain) meds which help take the edge off? Even if it's not TMS per se, the pain can get "wired" in / conditioned ... we are scared of the pain, we kind of expect it, and then there it IS, time after time and then it is easy for that "wire" to be so easily triggered, over time.
>I thought I'd throw it out here. I was hoping that maybe someone with a similar or somewhat similar problem could shed some light.
Did you see this thread:
"I remember Dr. Northrup (on Oprah) asked a woman who had fibroids if she was in a dead end relationship or job. So she sees that women's health issues can have an emotional cause or contributor."
http://www.tmshelp.com/forum/topic.asp?TOPIC_ID=5455&SearchTerms=fibroids
Also, it might help to start a post with "Fibroids" in the subject line ...
Anyway, those are some of my thoughts. Not sure if anything here would be helpful, but I guess we just do the best we can and I am not sure if there is anything else, fundamentally, than WavySoul's "love is the answer."
~RSR
|
|
|
|
plum
United Kingdom
641 Posts |
Posted - 11/23/2013 : 13:19:59
|
mala, my love, sometimes I wonder why we put ourselves through this either/or mill. Is it TMS? Is it not? I've reached the point where I give such extremism the two-fingered salute. For thousands of years we lived in harmony with Nature. Then came God and then Science and Medicine, and out the window goes the deep and abiding wisdom of the body. I don't believe there is any reason for a concept called TMS to hold you to ransom. I have seen this sacrifice cause people much confusion and harm. Sarno's brightest gift was to show us our own power. It was never an invitation to give that power away. Too often people reject the body aspect of the bodymind equation. Sometimes we need help to turn the tide. Damn anyone who judges that.
If you need surgery, have it. If you need meds, take them. If you need herbs or friendship or love...it is all here for you. I unconditionally support any choice you make. Lift yourself from the threshing-floor my darling. Be still. Listen. Act on your gut wisdom. The answer rests in your soul, in that deep quietness.
With my love and much peace. xxx |
|
|
| |
Topic |
|
|
|
would like some feedback on my current situation
