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05/13/2012 06:52 PM

Should I do the surgery? My symptoms/Please help

ohara916
Posts: 5
New Member

Hi Everyone,

I'm hoping that someone who has Endometriosis can point me in the right direction with what to do. The last few years I felt like my health was going down hill. I had been to many doctors, including a gastrologist for stomach issues. I had tons of testing done, but of course they found nothing and just said I had IBS. I went to a gynecologist last year who made a comment that she knew something was wrong with me, but didn't know what. Fast forward to this year and I decided to really start taking care of myself and getting some answers so I went to a new gyno. I notice some months I have spotting before my period. This may go on a week or two. Now some months it is maybe just 2 or 3 days before my period. Also I seem to have discomfort on my left side. Now this discomfort doesn't leave me stuck in bed or unable to complete my day. It is just there and it isn't pleasant, but not so bad I can't handle it.I sometimes have pain on my right side, but it is mostly my left.I notice usually two weeks before my period this discomfort begins and last through my period. My gyno was concerned the pain could also be because of my issues going to the bathroom. Now for months I was constantly getting diarrhea. Now these last few months I have been nothing but constipated. I'm not sure if this is IBS or something related to endo. My gyno was concerned during her exam at the fact I have a tipped uterus. Also I normally get very heavy periods....at least the first 2 or 3 days can be extremely heavy with horrible cramps and a bowel movement can be painful during this time. Also my concern is with intercourse. My husband and I are currently trying to have a baby and are now seeing a specialist. For me sex is uncomfortable. Now for woman with endo is it uncomfortable or is the pain so severe you can't have sex or it leaves you in tears? I just find it uncomfortable most of the time. I don't know if this is because of endo or my tipped uterus. I'd love to have a child, but as much as everyone keeps encouraging us to just go at it I can't. It is uncomfortable during it and even after I feel uncomfortable and somewhat itchy. Also sometimes I get a lot of headaches each month before, during and after my period and my moods seem all over the place. I'm constantly tired as well and don't sleep well. I guess with all of that my question is what do I do? My gyno said if my husband and I decided to wait to have a baby she felt we should do the laparoscopy. Now I'm in talks with the specialist we are seeing for trying to have a baby. They want me to do a test the end of this month to actually check about a fibroid I have on my left side. It is small and that is the only one, but they feel it may be pushing on a cavity. If it is I would need surgery anyway and they could check for endo or they said they can just do the surgery to check for endo, remove the fibroid and do any other tests like checking my tubes etc. From what I said is it worth my doing the surgery or do you think my pain is just IBS? I guess that doesn't explain the bleeding some months before my period. Some things come and go so I get a bit confused and unsure. I just don't want to have the surgery to be told once again I'm fine which has been the case with every other test I've suffered through the last few years. In my exam they didn't feel anything like scarring and so far nothing abnormal showed up on any ultrasounds besides the fibroid. Please let me know your thoughts and if you feel this could be endo. I'm just wondering how severe other peoples pain is. Maybe I have a mild case or don't have it at all? Any thoughts on this matter would be much appreciated. Thank you!

Post edited by: ohara916, at: 05/14/2012 12:57 PM

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05/14/2012 07:01 PM
Jennie10
Jennie10  
Posts: 523
Member

Hello ashley I got the pm sent

first of all teh only way to diagnose endo is with surgery. My pain didnt keep me in bed until the last three years before diagnosis it just progressibly got worse until it was at a point that i was really sick. Endometriosis does not show on ultrasound I had stage three out of four when i was diagnosed at 24 years old my gyn did not suspect that I had it let alone was at taht advanced stage for my age sorry dont want to scare u but this is my story. I had alot of tests many ultrasounds and they all showed nothing until the faithful day that i decided with my gyns guidance to go through with the laparoscopy. It was a rough choice but it was worth it I had the spotting between periods and heavy periods for a long time my pain lasted through my entire period as well judging by your symptoms I feel that the lap is probably your best option. if they do not find endo than it would not explain the pain but if they do you can get it treated and under control hugs and if u have any further questions please message me I may not answer right off after the 24th as i am having my own major surgery that is non endo related I hope this has helped you good luck with your decision


05/15/2012 05:28 AM
ohara916
Posts: 5
New Member

Thank you so much for taking the time to reply to me. I know that the last few years my health has seemed to be slowly getting worse. I appreciate you sharing your story with me and to know you have been through so many tests as well and told everything looked fine. I know how frustrating that becomes when you know something isn't right and everyone starts to say it is in your head or just stress. I think my best bet may be the laparoscopy. I'm still debating doing this first test the end of the month to have my fibroid checked. Depending how that is I may need surgery anyway, but then my fear is what if they say it isn't an issue? I think I need to eventually know for sure if I'm suffering from it. I have always had the heavy periods as well...ever since I was a kid. I guess only I can make the decisions, but I really wanted to get some opinions from other women so thank you so much for taking the time to write me. I really hope that your upcoming surgery goes well. I'm sending you hugs Smile

05/15/2012 03:34 PM
Jennie10
Jennie10  
Posts: 523
Member

thanks for the hugs and if you have a fibroid that could be what is causing some of the pain and bleeding as well I hope they figure this out for you and I would strongly recomend doing the lap i did and recovery was not too tough and when she did say she found something my response was I told you so she laughed and said you know your body i dont hugs are tehy doing an ultrasound on the fibroid hugs the inside of my uterus looks good its what is all over or was all over teh outside that isnt good I still have endo as u may or may not know there is no cure But I took two rounds of depot lupron and it helped greatly for me yes you will hear horror stories on it and my journey with it was not an easy one but I do not regret it now On my last lap she said that she only found one active enod lesion and that for teh moment lupron had shrank the rest of them by depriving them of estrogen. At the time of that surgery I had the maraina IUD inserted which took some getting used to but I think i may be on the upper endo with it now and it seems to have slowed the bleeding and hopefully it will keep the endo at bay as there is no estrogen in it just trying to give you some insight of what has or has not worked for me but it is not the same for everyone have u been on continupus birthcontrol pills kind of trying to get a feel for where u r at in your treatment with the fibroid and possibly endo

05/15/2012 06:18 PM
ohara916
Posts: 5
New Member

The fibroid is something new this year. I didn't have it last year and have been suffering with issues before that was there. Last year when I had an ultrasound they noticed a cyst on my ovary, but said I may have been ovulating when it was done so they weren't concerned and that did go away. Now this year after two ultrasounds they both showed the fibroid. I've always had the very heavy periods, headaches, and pain especially the last few years and intercourse has always been uncomfortable. I just always thought that is just how it is till recently and finding out more about endo from my doctor and online. I have heard of lupron from things I have read online. I know some people don't recommend it, but that is such great news it is helping you and yours seems to be under control. I'm so happy to hear that. As for me I'm not currently on anything. They don't want to do birth control because my husband and I actually are trying to have a baby. They felt if we could get pregnant first that would be best, but now I'm wondering if it is best to do the surgery and know for sure what is going on. We haven't had any luck at this point with getting pregnant so we are seeing a fertility specialist. They want to do a test to check the fibroid and see if I need surgery to have that removed or I can just do surgery, have that removed, let them do some xray test to check my tubes and then they would check for endo as well. I just feel somewhat stressed and unsure with what to do. Thanks so much for all the info. I really appreciate you taking the time to talk to me Smile

05/16/2012 05:30 PM
Jennie10
Jennie10  
Posts: 523
Member

your welcome and i would have them do the surgery because if it is endo there is info that shows that something to do with endo can affect the fetus and make the enviroment toxic they are unsure what causes this but it is shown that some people with endo can not become pregnant before treatment Usually with endo there is alot of free fluid in the pelvis at certain times of the month or at least in my case there was it showed when they did CT scans I had multipule from the Er beofre i was diagnosed and several large cysts on my ovaries at differetn times this condition is not an easy one to diagnose or treat but it is possible hang in there and use your gut instincct to do what you feel should be done dont let the doctors make the choice for u only you know how you feel my GYN refused to do surgery until I outright told her it was not a choice anymore i want waiting any longer her response was that is what i was waiting for i did not want you to feel pressured into the situation good luck

05/17/2012 05:14 AM
ohara916
Posts: 5
New Member

I hadn't heard about the environment possibly being toxic for the baby. I know it can cause issues with getting pregnant or you may have a miscarriage. I really have a lot to consider. I think I may do the first test they want to do on my fibroid and see what they say about that and if they feel I need surgery for that and from there I can decide what to do. In the end I think I know I need to have it done to know for sure. The pain on my side seems to be getting worse so we will see what happens. Thanks for all of your help Smile

05/17/2012 07:48 AM
Jennie10
Jennie10  
Posts: 523
Member

your welcome in some peopel the endo implants prduce chemicals that are toxic to the fetus not sure if it happens in all of them I would recomend if u read getting the book endometriosis for dummies I am in the proces of reading it and it has taught me a lot hugs

05/17/2012 09:17 AM
ohara916
Posts: 5
New Member

Thanks so much. I will check that one out. I got another book, but it is about 10 or 12 years old so maybe that one is a bit more up to date Smile
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