Aa
Is a laparoscopy a good decision?
The Background:
Around the beginning of the calendar year, maybe a month or so before, I started having mild pain on my lower right ab. Usually it wasn't all that bothersome, but it was getting to the point where I was feeling at least a little bit of pain every day. Then I woke up one morning in February and couldn't stand or walk the pain was so bad. I took some Aleve and it started to get bearable. My PCP's resident examined me and ran a urine culture. They decided it was a UTI and I did a round of antibiotics. A day later I got my period. A week or so later I went to my gynecologist and the pain hadn't improved at all. She did an exam and another urine and yeast test. She determined it was a deep tissue infection and gave me another round of antibiotics (urine tests came back positive for bacteria both times, yeast test negative both times). She suggested I get a transvaginal ultrasound just in case. My pain was slowly getting less, but still present all day every day. Worse in the evening and after exercise. Did the utlrasound and the pain increased again. The ultrasound showed two small cysts (2cm each) on my left ovary and that my right ovary is adhered to my uterus with scar tissue. She referred me to an endo specialist. He reviewed the ultrasound and said it sounds like endo, but ultrasounds are only 50% accurate in identifying a true adhesion (yay?! maybe it's not adhered?!). I was given the options to do nothing (since my pain had backed off and was entirely manageable), or go for surgery. I've been told I'm not a great candidate for managing with medication because I went on Depo a while back and bled for a solid year. I've since been on a progesterone only BC with no problems. The pain was entirely gone for about 3 weeks and has started to come back. It's still in the same place, but is so mild it's more of a general annoyance than actual pain.
I'm 26 years old, married, no children, but definitely want to have kids one day. My periods have always been pretty normal although they can be long and tend to be heavy the first 2 days. I have lots of spotting in the days leading up to my period- sometimes as many as 4 days of spotting before a typical flow.
The Question:
Should I go ahead and do the lap, or try managing the condition and symptoms without it- trying another BC, diet changes, other thoughts?? The pain has been manageable, but will it get bad again? My main concern is the affect on my future fertility. I don't want things to get so bad they cause me to be infertile, but from what I've read, the endo will almost certainly come back again anyway. Is this true? The surgeon said there is low probability of the endo returning after it's been cut out...
I'm just scared of making the wrong decision...
Thank you in advance for your thoughts and suggestions. My apologies for such a loooong post
:)
Around the beginning of the calendar year, maybe a month or so before, I started having mild pain on my lower right ab. Usually it wasn't all that bothersome, but it was getting to the point where I was feeling at least a little bit of pain every day. Then I woke up one morning in February and couldn't stand or walk the pain was so bad. I took some Aleve and it started to get bearable. My PCP's resident examined me and ran a urine culture. They decided it was a UTI and I did a round of antibiotics. A day later I got my period. A week or so later I went to my gynecologist and the pain hadn't improved at all. She did an exam and another urine and yeast test. She determined it was a deep tissue infection and gave me another round of antibiotics (urine tests came back positive for bacteria both times, yeast test negative both times). She suggested I get a transvaginal ultrasound just in case. My pain was slowly getting less, but still present all day every day. Worse in the evening and after exercise. Did the utlrasound and the pain increased again. The ultrasound showed two small cysts (2cm each) on my left ovary and that my right ovary is adhered to my uterus with scar tissue. She referred me to an endo specialist. He reviewed the ultrasound and said it sounds like endo, but ultrasounds are only 50% accurate in identifying a true adhesion (yay?! maybe it's not adhered?!). I was given the options to do nothing (since my pain had backed off and was entirely manageable), or go for surgery. I've been told I'm not a great candidate for managing with medication because I went on Depo a while back and bled for a solid year. I've since been on a progesterone only BC with no problems. The pain was entirely gone for about 3 weeks and has started to come back. It's still in the same place, but is so mild it's more of a general annoyance than actual pain.
I'm 26 years old, married, no children, but definitely want to have kids one day. My periods have always been pretty normal although they can be long and tend to be heavy the first 2 days. I have lots of spotting in the days leading up to my period- sometimes as many as 4 days of spotting before a typical flow.
The Question:
Should I go ahead and do the lap, or try managing the condition and symptoms without it- trying another BC, diet changes, other thoughts?? The pain has been manageable, but will it get bad again? My main concern is the affect on my future fertility. I don't want things to get so bad they cause me to be infertile, but from what I've read, the endo will almost certainly come back again anyway. Is this true? The surgeon said there is low probability of the endo returning after it's been cut out...
I'm just scared of making the wrong decision...
Thank you in advance for your thoughts and suggestions. My apologies for such a loooong post
:)
Welcome to the Endometriosis Forum. I am not a doctor but an advocate and a fellow Endo sufferer for the last 25 yrs.
I will help and guide you the best I can with the most accurate information as most information on the internet is highly tainted with misinformation leading women to feel lost and confused even doctors.
I have some questions for you as well. The two cysts must be Endometriomas (blood Filled) if the doctor is saying he thinks its Endo. If you have blood filled cysts that is an indicator of moderate to severe disease and yes I would advise a lap but not with that doctor.
To do the best at conserving your fertility the best as you can you want to fin the best Endo specialist to excise (cut out) the disease. That being said there are only a handful worldwide for 179 million women who have endo so I can guide you to where you can get the best treatment if you let me know where you are.
After the surgery is done most surgeons will try to push Lupron or zolodex or the depot shot. My opinion is to try a low dose BCP that you take continuously everyday no breaks until you have breakthrough bleeding which would be around every 3-4 months. There for no periods no pain etc. This was magical for me and worked amazing. I have tried many different meds for Endo but there were way too many side effects and some of them permanent. Also no matter what you take it will not stop the growth of Endo. It will continue to grow even if it is excised however the chances of it growing back are less because it gets to the root of the disease where most obgyn do laser for the entire surgery in which only gets to the surface.
I like some have aggressive Endo. I was on the BCP for 8 yrs however before this time I was not diagnosed for 14 yrs and the damage to my organs was done. It can't be fix and this is why you need to do it as its the gold standard of treatment for Endo.
I have some journals as well as a blog I usually send people to so they can read my story and some can relate to and finally feel they are not alone with this disease.
Some people don't have symptoms and yours because of the cysts makes me think you have Stage III or IV but no symptoms which can happen as well. I had Stage IV both times and I was in excruciating pain since my second period at 13. Everyone is different with this disease as it does not discriminate. There is no way to tell if you will be infertile or not you will only know when you try. I was Stage IV and conceived but it took a while. I know many who have Stage I that can't conceive so keep that in mind and try not to worry about that aspect at this time. Just be an advocate for yourself and get the best surgeon to operate on you and take the necessary steps in doing so. Keep all your records like U/S and CT scans etc.
It is possible with the bladder symptoms that you have you have either Endo on your bladder as well or that its possible that you have interstitial cystitis also called IC. During surgery most likely they would do a cystoscopy to rule it out. I don't have it but have all the symptoms of it.
There is much to be said about it as well. I have been told I had it by 3 Endo specialists as well as the IC network however my urologists that I have seen said no. Urologists usually look inside the bladder to see if there is inflammation, bleeding or cracks etc. that is how they determine it but no test is really 100% when it comes to IC. There are two diets you can try and that is the IC and Endo diet all pretty hard to maintain for many. I do a variety of many such as Gluten free 80% of the time and Dairy free 70% of the time, vegan, vegetarian and I juice.
I hope that helps. Ask me any questions at all I am always here. I just noticed your doctor said cut it out so he must do excision I would be curious to know his name so I can check into it. Him saying it wont grow back after cutting it out is one of those things that I want to believe however mine grew back with vengeance so either it wasn't full cut out because it was so deep or in fact it did grow back and it was all in the same places as the first time which I find odd so it must have just kept growing. Canada has limited amounts of Endo surgeons so he was the best I could get. Now I wait and pray to the high heavens it doesn't come back :)
I will help and guide you the best I can with the most accurate information as most information on the internet is highly tainted with misinformation leading women to feel lost and confused even doctors.
I have some questions for you as well. The two cysts must be Endometriomas (blood Filled) if the doctor is saying he thinks its Endo. If you have blood filled cysts that is an indicator of moderate to severe disease and yes I would advise a lap but not with that doctor.
To do the best at conserving your fertility the best as you can you want to fin the best Endo specialist to excise (cut out) the disease. That being said there are only a handful worldwide for 179 million women who have endo so I can guide you to where you can get the best treatment if you let me know where you are.
After the surgery is done most surgeons will try to push Lupron or zolodex or the depot shot. My opinion is to try a low dose BCP that you take continuously everyday no breaks until you have breakthrough bleeding which would be around every 3-4 months. There for no periods no pain etc. This was magical for me and worked amazing. I have tried many different meds for Endo but there were way too many side effects and some of them permanent. Also no matter what you take it will not stop the growth of Endo. It will continue to grow even if it is excised however the chances of it growing back are less because it gets to the root of the disease where most obgyn do laser for the entire surgery in which only gets to the surface.
I like some have aggressive Endo. I was on the BCP for 8 yrs however before this time I was not diagnosed for 14 yrs and the damage to my organs was done. It can't be fix and this is why you need to do it as its the gold standard of treatment for Endo.
I have some journals as well as a blog I usually send people to so they can read my story and some can relate to and finally feel they are not alone with this disease.
Some people don't have symptoms and yours because of the cysts makes me think you have Stage III or IV but no symptoms which can happen as well. I had Stage IV both times and I was in excruciating pain since my second period at 13. Everyone is different with this disease as it does not discriminate. There is no way to tell if you will be infertile or not you will only know when you try. I was Stage IV and conceived but it took a while. I know many who have Stage I that can't conceive so keep that in mind and try not to worry about that aspect at this time. Just be an advocate for yourself and get the best surgeon to operate on you and take the necessary steps in doing so. Keep all your records like U/S and CT scans etc.
It is possible with the bladder symptoms that you have you have either Endo on your bladder as well or that its possible that you have interstitial cystitis also called IC. During surgery most likely they would do a cystoscopy to rule it out. I don't have it but have all the symptoms of it.
There is much to be said about it as well. I have been told I had it by 3 Endo specialists as well as the IC network however my urologists that I have seen said no. Urologists usually look inside the bladder to see if there is inflammation, bleeding or cracks etc. that is how they determine it but no test is really 100% when it comes to IC. There are two diets you can try and that is the IC and Endo diet all pretty hard to maintain for many. I do a variety of many such as Gluten free 80% of the time and Dairy free 70% of the time, vegan, vegetarian and I juice.
I hope that helps. Ask me any questions at all I am always here. I just noticed your doctor said cut it out so he must do excision I would be curious to know his name so I can check into it. Him saying it wont grow back after cutting it out is one of those things that I want to believe however mine grew back with vengeance so either it wasn't full cut out because it was so deep or in fact it did grow back and it was all in the same places as the first time which I find odd so it must have just kept growing. Canada has limited amounts of Endo surgeons so he was the best I could get. Now I wait and pray to the high heavens it doesn't come back :)
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