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Should I ask/demand a laparoscopy?

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kateka228
kateka228

Ever since January 2017 my husband and I decided to try for kids. I thought this would happen fast because it had for my mom, sisters, and most of my cousins. Getting off of birth control started horrid pelvic pain for me. Ever since April 2017 my pelvic pain reached another level. I learned I had a hemoragic (bleeding) complex cyst then. It was hard for me to even stand that month. I thought once the cyst went away that the daily pelvic pain would stop, but it didn't and I am still experiencing it and still not pregnant.

I experience pelvic pain daily that is dull when laying down or sitting, but that pelvic pain becomes sharp and heavy feeling almost on my pelvic bones right around my period. My periods have also become heavier and putting in a tampon is sometimes hard. I also have been experiencing painful intercourse about 75% of the time (even with lube). Sometimes I also experience a shocking pain in my pelvis or my anus when it is time I am ovulating. I have had other cysts since which are functional cysts. I am suffering from bad cystic acne and some rib cage pain as well where it feels lile it is popping out. Add not getting pregnant even though it has been 11 months.

Because of these issues I suspect I might have endometriosis. I especially think because 7 years ago in 2011, I had similar anus sharp shocking pain and an ovarian cyst, which led the ER doctor likely misdiagnosing me with PID and then the following week an obgyn telling me I actually just had an ovarian cyst. She put me on birth control which I did for 6 years and it seems ironic that as soon as I am off it my body goes haywire and I have agonizing pain.

I have discussed my pain and infertility with obgyns and while 2 of them think I could potentially have Endo they never suggest a laparoscopy. I am wondering if it is worth getting done or asking them to have done for me if I am not 100% sure I have it beforehand. I want answers and every test they did on me had dead ends (checked blood for PCOS, checked ultra sounds, checked CAT scan). One of the doctors also made it seem like laparoscopy would not even help much and it is better to wait until I have more symptoms. She also really insisted I get back on birth control which contradicts my plan for a family...

I really want to know if I should get a laparoscopy to seek a diagnosis.. I also would like to hear from those who had it done if you knew you had endo before your surgery, and if it helped you painwise and fertility wise. I am also concerned about if I get a LAP done that I could have adhessions, PID, or ectopic pregnancies occur after.

Please help.. I feel so lost emotionally and even found out two months ago that my husband who is only in his twenties (as am I) and has chronic myeloid leukemia. This year is a whirl wind..

0 likes, 12 replies

12 Replies

  • kateka228
    kateka228

    Posted

    also one more disclaimer. I want to see if a laparoscopy is worth it, because while I know I can just see a fertility specialist for help, only 50% of seeing them is covered under my kaiser insurance. This is compared to tests,surgeries, and appointments unrelated to fertility for me that Kaiser covers with just a small copay for me.. I believe laparoscopy could fall into the covered portion whereas fertility specialist appointments and tests are pricey.
    • aitarg35939
      aitarg35939 kateka228

      Posted

      Kate, this has not been a good year for you and your husband, and I am sorry.

      A laparoscopy is the only definitive test for endo thus far. Nowadays apparently docs often do some cleanup as part of a lap, at least in the UK. I'm in the States, too, and back in the old days they did a lap just to diagnose and a 2d surgery to scrape if the woman wanted that. But as you know, your other tests can't say if you have endo. Find out ahead of time what doc will do while you're open if they find endo, i.e., will they remove, etc.

      Yes, the lap can cause adhesions, but what precisely does that doc think endo does? It causes adhesions while doing its various merry things. So that one's a toss up except that it tells you that that doc doesn't know much about endo.

      Me, I didn't want kids so I went straight for a total hysterectomy. We have plenty of women on here who've conceived after a lap. You didn't mention your age, which is a big factor regardless of endo. There can be issues with ovaries, etc., which don't show on scans but will show when the doc sees them. A lap is no guarantee of anything except a much clearer picture & diagnosis.

      Fertility treatments cost a fortune and they don't come with a guarantee, either. The cancer will be expensive, too, unless you've got coverage for all the time that both of you will miss from work. The fertility doc should tell you that the biggest enemies of fertility are desperation for pregnancy, worry, and anxiety. Women still get pregnant, it's just that those things make it harder for anyone not experiencing a-man-looked-at-me-&-i'm-pregnant natural fertility.

      I think back in '11 you got the lazy doc Dx, but they would've tried you on BCP for endo, anyway.

      Good luck, to both you & your husband. We are always here & we know & understand both the physical & emotional pains.

    • n48638
      n48638 kateka228

      Posted

      I am really sorry to hear about all you faced this year. I had a laparoscopy done in August in order to remove a big complex cyst and the specialist already suspected that I had endo. based on my symptoms and the fact that my CA125 test was high. He made it very clear that  many women have endo and by removing endo, it can fix or greatly improve fertility however I was not planning on having children. I had advanced endometriosis and this was only discovered during laparoscopy as this is the only way to determine if you have endometriosis and how advanced it is. I highly recommend that you seek the best gyno specialist you can afford and someone who has experience and success in laparoscopy , fertility, endo and cysts. I saved money in order to see this specialist as he had an excellent success rate and highly experienced. My surgery was a success and the endo as well as the cyst was removed with no complications. I have to be honest in saying that he advised that endo is a long term disease and it can re-occur and he put me on (visanne) progestin tablets 5 weeks after surgery but I was not able to tolerate  Visane at all due to numerous side effects and currently not taking anything and knowing that endo might come back. So, laparoscopy will definitely remove endo but see the best specialist and do your research as this would greatly minimise  complications. Endo can cause infertility and symptoms you are experiencing as I had similar symptoms. But, laparoscopy does not guarantee that endo will be permanenlty removed as endo is a long term disease.
    • kateka228
      kateka228 aitarg35939

      Posted

      Thank you for advice on what questions to ask pre- LAP. I will definitely take them into account.

      I can understand what you mean about anxiety and stress can hinder fertility, I guess I have a hard time not worrying because since I was younger (and likely misdiagnosed with PID by an ER person when I was 18) I thought I could potentially never have kids. So then to have a hard time having kids made that fear feel even more real. I am 25, so it is hard for me to not only see my sisters and cousins having kids easily in their 30s, but also how I struggle on top of this with the physical pains both daily and cyclically. I also feel a little stressed because of my doctors not recommending a laproscopy or further research for me, other than a fertility doctor's number and birth control. I feel sometimes I am not listened to and have had to really advocate for myself and do my own research.

      In America I have an insurance called Kaiser, where only 50% of every fertility appointment is covered ($150-$200 for just a consultation alone after the discount already factored in), but normal obgyn appointments and outpatient surgeries are just $15 per visit.. That is why I almost just think I should ask for a laparoscopy to get a diagnosis and help with fertility since it would only be about $15.

      It really has been a sh** storm of a year between this and my husband's diagnosis. Luckily my husband also has health insurance and chronic myeloid leukemia is one that requires daily chemo pills instead of radiation or removal of anything. I am thankful that we both have insurance, since I know not everyone is blessed with coverage. I am also thankful that people like you can help the pain I am experiencing by helping it feel understood and not just all in my head (like some doctors have made me feel in the past).

    • kateka228
      kateka228 n48638

      Posted

      Thank you for your honesty and sharing your experience! I am happy for you that your laparoscopy went well, and hope that you will continue to feel better and have wisdom for whatever steps come on your journey with pesky endometriosis!!

      I realize that endo will be a long term issue if I get diagnosed officially with it, and that a laparoscopy does not cure it.. But I guess I just want to know what is going on with my body even if pain can return shortly after, and maybe have a better shot at having kids. If you don't mind me asking were your issues with ovarian cysts always chocolate cysts/endometriomas? Or did you sometimes have other cyst types?. I am not sure what the difference between an endometrioma and a complex hemorragic (bleeding) cyst which I had in April. Since April the newer cysts I have had tend to be functional cysts.

    • n48638
      n48638 kateka228

      Posted

      I had a large complex cyst and the surgeon wanted to operate to get it before it bursted or twisted etc. I also had other simple cysts and polyps.
    • kateka228
      kateka228 n48638

      Posted

      Wow. I can only imagine how painful that would be to have a complex cyst big enough for surgery removal to be the option they went with... I typically have only had ovarian cysts between 2cm and 5cm. Most of them I can tolerate or the pain feels minor compared to my heavy pelvic pain which is the main issue I have, but with my complex hemoragic cyst I could barely stand for long intervals for a month..
    • aitarg35939
      aitarg35939 kateka228

      Posted

      I know Kaiser. Not well, but whatever you've got as you say beats by far those without coverage in this country -- or those about to be booted off the entire CHIP program.

      The other poster is right: find the best endo specialist possible. I know someone has mentioned a doc in California on this site before, but it's been quite some time. I'm assuming you're in California just because of Kaiser. I sort of recall the doc being in LA, but not sure.

      As to endo being a lifetime thing: I was extremely lucky. Had my total hysterectomy at 27. Had some pain after surgery which subsided over time. Then at 54 (27 years later!) I had a bowel resection. All docs thought it was diverticulitis and were shocked when the pathologists report on the removed section said endometriosis! No doctor up til then had ever mentioned that it might come back. I am glad that I didn't know that it could because I had 27 worry-free years. Which reminds me: I know a nurse practitioner here who's had 3 kids on endo, starting at age 33 with the last at 42. So don't give up!

  • Guest
    Guest kateka228

    Posted

    Hi,

    So sad to hear about your situation. But I'm wondering that why your doctors were unable to diagnose correctly!

    In my case, I consulted the doctor with irregular periods, and sharp pain in my left lower abdomen, my doctor immediately opted for an ultra sound scan, they found the change in dimension of the ovaries and reported that it is a cyst, then did an MRI scan and confirmed it.

    Immediately started the medicines.

    Since it is a recurring disease, it is better to try to manage it with medicines. Hope the doctors will guide you to a safe pregnancy

    • kateka228
      kateka228 Guest

      Posted

      They have really tried to persuade me to do medicine-birth control and etc. But it would be counter productive to trying to have a baby. So I am stuck in this inbetween of being in pain but wanting a kid.
    • kateka228
      kateka228 Guest

      Posted

      Thank you for your sweet wishes. i am hoping so too. and hoping if I choose to go forward with a laparoscopy to help get a diagnose and help temporarily with pain and fertility, that I am making the right choice...
  • joanne10889
    joanne10889 kateka228

    Posted

    I had my first laparoscopy at 15 and they found endometriosis which was burnt away. I was pain free for about 6 months and then it came back. Over the last 18 years I have had 10 laproscopies to remove endometriosis and scar tissue that was a result of the previous laproscopies. I had an ectopic in 2011 and another one in 2016. The surgeries to remove the endometriosis caused so much scar tissue that it damaged my tubes. I am now left with no fallopian tubes so my only option for a family is IVF. If I knew how much damage it would have caused I would have tolerated the pain. There is a tablet that you can take which works kind of the same way as the pill it will stop your periods but not interfere with your chance to have children as you can still get pregnant on it. I was put on tablets which mimic menopause and that helped the pain but made me overally hormonal. Before my ectopics I was offered Clomid to increase my chances of having a baby. There are more options than just the pill and surgery to control endometriosis pain but I didn't find that out until it was too late.

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