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Avatar universal

How long before you got your first laproscopy (from the first suspician of Endo)?

I'm not sure my question makes sense... but here we go.

I have Kaiser, and went to the ER at the beginning of April thinking I had another bad kidney infection (I have had 2 severe infections before, so I was familiar with the pain). They did a CT scan, checked my blood and urine and everything came back 100% normal. They could see absolutely nothing wrong on my scans so they sent me home with anti-nausea meds and some pain pills (Norco 10/325 which made me itchy and didn't touch the pain).

I made a follow-up appointment with my doctor for 2 days later, at which time the pain had settled into my left ovary area. It was excruciating and uncomfortable - I could not work and it was extremely distracting. I continued to take the Norco, hoping that somehow it would magically work. I also suffer from chronic migraines and take ibuprofen regularly, but that was not helping either. I saw my doctor (first and last time I met her) and she did a very short physical exam, meaning she only lifted my leg up and down, and pressed gingerly down on my uterus/ovaries. That caused even more pain, I had tears in my eyes, and she asked me about my diet. I described my diet and she literally said "Typical American diet, then. You eat like an American, you will die like one" and then printed me up a packet of 15 pages - the first 5 were telling me to cut everything out of my diet, no meats, no gluten, no dairy, etc. The last 10 were exercises she wanted me to do. She made me feel like a horrible human being. Needless to say I fired her and picked a new doctor.

Then I began to email my OBGYN. I described my symptoms and she said it likely sounded like endometriosis but I'd have to come in and be seen in order to "know for sure". I went in the next week (this was my 2nd week off of work, no compensation) and she did an internal exam. Pressed on my ovaries and I exploded into tears involuntarily, she CONTINUED to press on them despite my bawling (tears everywhere, snot dripping down my cheeks) and show me my insides on the ultrasound. Obviously, my ovaries looked fine, no cysts or anything "alarming". She gave me a useless note for the next week off of work, gave me a prescription for birth control (despite being aware that I want to get pregnant ASAP, I have already been trying to get pregnant for 2.5 years at this point!!!!) for 3 months and said "we'll see what the hormones do to the pain". She also gave me Tramadol and Ibuprofen, both of which are obviously not helping in the least.

Well I've been on the birth control for almost 3 weeks now, and have not had any change. In this time, I have chosen a new PCP who seems to be just lovely. I've described my pain to her and she agrees that it is most likely endometriosis, HOWEVER, she thinks I should try the Lupron shot to see if it works or not. I have explained to her, and to my gyno, that I am in UNBEARABLE PAIN. It hurts to sit, it hurts to walk, I can barely stand to work because half of my job is bending over (that sounds weird but it is!). I am starting my period in a week and by then it will be a 10/10 on the pain radar, coupled with my already horrendous periods. Both doctors are ignoring my request to be given something - ANYTHING - for the pain. They are still suggesting I come in for this shot despite me telling them I am terribly uncomfortable with it.

My question is... how long did it take for your doctor to recommend the laproscopy? Did they throw you through the ringer like this? My best friend has Endo and was in surgery within a WEEK of SUSPECTING she had Endo!!

I feel like I am just being dragged every which way, and I am the only one suffering here (with the exception of my ever-loving partner who is dealing with my horrible mood swings thanks to the lovely freaking birth control that I didn't want to be taking EVER AGAIN!!).


Here's a shortlist of my symptoms thus far:
-horrible pressure constantly in my uterus/ovary area
-sharp stabbing pains in whatever side i'm ovulating from (last month is was left, now it is right)
-pain during sex!! makes me sick
-extreme nausea to the point of not wanting to eat or move, but this is cured by the meds they prescribed for it
-very bad, painful periods. they aren't always very heavy but i have never had a non-painful period. (i have had to call off of work, call off of school, etc)
16 Responses
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136956 tn?1688675680
I will inbox you the links :)
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7486852 tn?1410352184
Id like the links;)
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7486852 tn?1410352184
I too lost my last job (as well as all my jobs) due to missing work for Endo pain (as well as other conditions). Its very stressful. I have been fighting for disability since 2009 for Epilepsy, Arthritis, Nerve damage, Depression, Anxiety, Headaches/migranes,  and now I have to deal with the chronic pain and fatigue from endometriosis:( We are going to Federal District court the last step in the appeal process. Just try not to get discouraged if you apply and have to fight it. I know a lot of people just give up that's what they want you to do. Do not give up!:) *Wishing the best*
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136956 tn?1688675680
hmmm I will message you the links and anyone else who wants them
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136956 tn?1688675680
Sorry for not responding earlier I have not been well and have major surgery on Friday but I wanted to catch up with all he posts.

I am going to ask some endosisters who has the same insurance and who they saw if that is okay.

I lost my job as well in February just after asking about short term disability. I am upset still over that as I worked there for 10 yrs and I didn't see it coming and there was no cause to let me go. I can at least get unemployment for a year while I look after that I don't know what to do.

In Canada I know Endo is not yet seen as a disability but some places in the US and UK are. So let me find out :)

If you are going to go on any Facebook pages for help let me recommend the best sites for you. I often go to ask questions for people on here if I am unsure.

Ist one is great its called Endometropolis many top specialists come there to answer questions for you as well.  https://www.************/groups/endometropolis/

also there is another called Nancy's nook she has been an advocate/nurse and sufferer for over 30+ yrs and the reason why we are as far ahead as we are. She is amazing. https://www.************/groups/418136991574617/

I would not recommend Lupron but it is good for you to research it. Here is a place where I write as well as other Endosisters. This is the link to our lupron experiences.

http://www.hormonesmatter.com/?s=lupron&submit=

Let me know if you need any more help. I am here.
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Avatar universal
I work part-time as a Barista for a family-owned business (local family, not mine), so we don't exactly get "sick time" or medical leave. I'm under my mom's insurance with Kaiser, so I have no risk of losing it, per se, for several years. However, I think I will be applying with MediCal regardless. I'm trying to connect with some people locally on Facebook to see which doctors they saw, with what insurance, etc. I want to find someone experienced, not just a general gyno who won't listen when I am hurting this badly, but also want someone as local as possible.

I don't know how to word my request to my gyno to tell her I need something that says I can't work for my Disability paperwork. That sounds horrible and makes me feel useless and weak (does that make sense?)... I feel bad just thinking about asking. Any advice on how to word that?

I will also look into those specialists posted above, thank you for that!

My PCP responded to my last email, only saying that she was sorry I was in pain but she didn't think she could help me other than to send me to a gastro doctor to see if it had to do with my intestines/stomach, but she believes that I need to talk to my gyno about going on Lupron. I don't think I'll be responding to her. I have already decided that Lupron is not for me.
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Avatar universal
I'm so sorry to hear about your job situation.  It seems so wrong they would do that when it is a medical situation, but I guess it is what it is.   Were you on any sort of medical leave when they let you go?  If so, I'd see if there is anything you can file for with the labor board in regards to that.

I'd definitely look into Medical or some sort of cheaper plan since I'm sure your benefits will be ending soon if they were through your employer, and I can only imagine trying to pay for Kaiser and all this on your own will be unfathomable and overwhelming when you're already going through so much.

My dad had to go on disability briefly almost a decade ago due to an aortic dissection.  His doctors filled out the form, and he got it once it was processed, which can take a while.  Anything the government does tends to.  However, you should get back pay for the months that pass between applying and the beginning of payments.  Maybe things are faster now, but I wouldn't count on it.  But definitely apply and apply soon.
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Avatar universal
Thank you everyone! I ended up at the ER yesterday (I called the advice nurse, sobbing, and she said my level of pain was too high not to come) and the doctor only offered me a shop of 1mg of Dilauted and more norco and sent me home still blubbering from pain.

I have also been let go from my job as of yesterday. I'm waiting to hear from my doctor now on what to do next, though that probably won't be until Monday or Tuesday. I am going to try and apply for Disability but don't know how it works. I don't even know if anyone else with Endo has had to do this, I'm sure they have right? I'm not just a big baby or something?

After I hear from my doctor, if she doesn't offer laproscopy immediately I'm going to get off of my insurance and just start going to my local ER until something is done. I'm already in so much pain, I'm drowning in it. I'm also drowning in debt now! As soon as I hear from the doctor, I will look into contacting those specialists. Both are pretty far but at this point I am desperate, this is no way for someone to live. I wouldn't wish this on even my worst enemy.
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7486852 tn?1410352184
Oh I'm having to raise money by the way, because my insurance doesn't cover infertility treatment:( (I forgot to mention that) and p.s. *Ticked* who also commented Has been very very helpful and informative for me. (: So glad she commented on my post.
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7486852 tn?1410352184
We have a lot in common. My gyno thinks I have endometriosis although we have talked about a laparoscopy and cystectomy because I have a left adnexal mass she thinks its a dermoid because Ive had it for three or more years now and it won't go away nor shrink with B.C. I've decided to start a gofundme to try an pay out of pocket for an endo specialist who does excision I am going to have to travel and suffer until I can raise enough but if it means it'll be done right Ill do what I have to do. I so very much want to have at least one child of my own, and I could always adopt. I think the longer I wait and "try" these B.C. pills the less of a chance Ill have as I get older. I have also been trying with no luck for 2.5 years if not 3. I think surgery may bring me luck I am hoping. I went to school with a girl who also had endo and had a laparoscopy to remove the tissue and she got pregnant. If you ever need someone to talk to Id be more than happy to. I think its awesome to be able to communicate and relate because not everyone understands and not everyone wants to talk or hear about it. I get lonely sometimes. I know my family cares and all and my friends but i think they try to avoid the topic at times and all you want is someone to listen I know they won't really know what to say, but I still need to vent so now I come here where I'm understood(:  
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Avatar universal
Yes, Kaiser's a private insurance, an HMO.  Just limits its coverage to its own hospitals/doctors in most cases with exception for emergency services, though.

Hopefully a specialist would have a good enough sliding scale to help, if that ends up being the route she needs to go!
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136956 tn?1688675680
I am not american so when you say you have Kaiser is that insurance?

If you are in California you have two of the top Endometriosis Specialists in your area. Here are the names. Maybe give them a call tell them your story maybe they can help. Having a laparscopic surgery is minimally invasive when done with a specialist. There are only a dozen worldwide for 179 million suffering from Endometriosis so you want your first time to count. No use having someone going in just to diagnostic only to leave the Endo behind.


Dr. Camran Nezhat

Center For Special Minimally Invasive & Robotic Surgery,
900 Welch Rd
Ste 403
Palo Alto, CA 94304
T. (650) 327-8778

Specialisation: GYN only
Bowl/urinary tract surgery: Does some bowel/urinary tract work

and

Dr. Andrew Cook

Vital Health,
14830 Los Gatos Blvd,
Ste 300,
Los Gatos, CA 95032
T. (408) 358-2511

Specialisation: GYN only
Bowl/urinary tract surgery: Does some bowel/urinary tract work.

*Dr. Cook's practice offers a functional approach to treating endometriosis.
Helpful - 0
Avatar universal
Thanks, I've submitted my complaint in regards to the first doctor.

Today my pain is an 8/10. I have gotten to the point where I can't wear makeup because at some point in my day, I will burst into tears from the stabbing pains. I am ovulating tomorrow or Monday which is why my pain is getting so strong, but at this point I am so lost and so depressed that I don't know what to do.

I wish I could afford to go to the ER but like you said, it's very expensive and I know they will just give me more pain pills that don't fix the problem and send me on my way, and I'll be $250 in the hole, plus the expenses from whatever they prescribe me.

If that enrollment comes up again, I might be able to sign up. I work in a part-time job though, and getting there is hard enough for me lately with the pain I'm in. I don't know how I'm supposed to pay for all of this. :( Sigh. I'm just so exhausted!
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Avatar universal
https://healthy.kaiserpermanente.org/health/care/consumer/locate-our-services/member-services/function

^ There's the link, should Medhelph show it.  I just googled "Member Complaint Form Kaiser," and it was the first result.  I know the "Submit a complaint" link works if you're logged into your account on the site.  To get there that way, you just hover over "Locate Services" when logged in and click "Member Services."

Have to love how Kaiser likes to have places far away.  There've been rumors (confirmed by staff at Kaiser when I've asked) that they're planning to make one in the town I live in, but I've heard that at least 5/7 years that I have lived up here.  I have to drive an hour away to Roseville or Sacramento, if I need to go to the doctor.  But it's worth it. The local hospital is...well, amply named as you're pretty likely to die there if you go to them.

You speak of Medical and difficulty paying co-pays for appointments if you have to keep going so often (I feel you there.  They can be high depending on the plan.)... If you would qualify for that, is it possible you would qualify for Kaiser's steps plan when they open enrollment again?  It goes by age groups and income.  For mine, I would pay $69 a month and have $10 co-pays for everything but ER would be $50, which is a lot better than my parents' plan.

Best of luck!  Definitely stand up for yourself as being your own advocate is key to getting what you want.  It sounds like surgery is necessary in your case, given the fact you're in chronic pain.  No one should have to live like that.
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Avatar universal
I am in Northern California, this was all at the Santa Rosa offices. I have previously been to Vallejo and love their services but the drive is nearly 3 hours each way from where I live now (Santa Rosa is 1.5 hours away and the closest one to me yet).

Nobody that I know has Kaiser, in fact everyone is on Medical. I have talked to nurses who were astonished that I hadn't been referred for surgery, and highly recommended that I drop Kaiser completely and try to get on Medical. I am worried about the length of that process and I am in so much CONSTANT pain that I would think my doctors would be taking more action for me.

I don't have the income (because I have been missing so much work due to the pain!) to pay the copays to go be seen by the doctors every week, and I am already exhausted of chasing them through the ringer.

Do you happen to have a link to the complaint form for KP? Thanks for the comment. I am still really uphappy with my treatment and I believe a lot of it is due to my age and that I'm overweight, though besides the suspected Endo, I'm perfectly healthy.
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Avatar universal
It sounds like your doctors are doing typical procedure for this condition.  My friend has endo and PCOS and is on birth control to have as few periods a year as possible to avoid more tissue or cyst growth.  Surgery is a serious decision.  However, I am still surprised you haven't had surgery lined up since you are in chronic pain.

I've found with Kaiser that it depends where you go.  When I lived toward the East Bay growing up, we purposefully went across the bridge to Vallejo rather than the Oakland or Richmond ones due to horrible stories.  They took care of everything quickly.  The one up here in northern California isn't bad either and is prompt.  I went into the ER with an ovarian cyst (was suspecting appendicitis) and had my cyst removed that night.  Do you have any other facilities in your area?  Maybe some people you know who also have Kaiser and have doctors who are a little more quick to action?  

Kaiser's big thing right now is preventative care, and what they are giving you is standard procedure.  However, they're usually pretty big on being swift when you are in chronic pain like you are.  I'd press the issue.  Sometimes doctors won't do things unless you are your own advocate.  I'd probably put in a complaint to member services about the former PCP who was so insensitive and, if another appointment doesn't get your point across to the OBGYN, put one in against her as well.  It's really easy, just an online form on the KP site.
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