Seeking answers?

Hello,

I had a Laparoscopy on Feb 23rd and the Doctor confirmed Endometriosis and removed it from a few spots the most of it was removed by picking up my uterus and removing the endo from underneath it. The doc told my family that he would do everything he could to help me maintain a hogh quality of life and monitor my condition. He told them I had a boggy uterus and birth control may stregthen it and also that he thought that adenomyosis may be the cause for that. He also told them he would keep me on birth control continuously and that the Lupron shot would be a last resort. He also told me at my pre-op that getting a colonoscopy would be the next step as I am suffering from monthly rectal bleeding and randomly pain during defecation also constipation and perdominant constipation/diarrhea episodes. So the reason I am here is because after the surgery 1 week later on the 3rd of March I had my follow up appointmment and my doctor's whole attitude and story changed. He explained where he found the endo and how he removed it and checked the incisions. Then he said I could choose to stay on birth control but I would probably have to have another laparoscopy a couple years down the road. Then he said my second option was more aggressive and would be a shot called Lupron and a med called addback to re introduce small amounts of progesterone into my body to combat Lupron side effects. I asked him if that aggressive of a treatment option was justified for my endo case and he said "yes definitely" and said that his recommendation was to do the Lupron shot for 6-12 months. (This confused me because Lupron was his "last resort" option on the day of the surgery). I said I would stay on birth control for now and think about my options. I asked him about what he had planned in order to keep tabs on my condition and he said that there was no way to monitor it and only that if my symptoms returned I should come back. (Again not what he had said to my family). I then had to ask him about my boggy uterus and he said "there is nothing we can do about it and I am not sure why its like that but it shouldn't affect childbirth... its probably just adding to your heavy cramping." This was also not what he told my family on the 23rd and he also never even mentioned anything about the possibility of adenomyosis. I also had to remind him about the colonoscopy he was rather adament about wanting me to get... he told me that he wouod send a refferal to the gastro team at my clinic. When I got the call from the gastro clinic it was only for a referral for a consult with a gastroenterologist and no mention of a colonoscopy... when I told the scheduling staff that I was experiencing rectal bleeding she told me to call my doctor back right away and request a refferal for the colonoscopy procedure itself not a consult because my rectal bleeding needs to ve checked out right away.... I am just so confused by why my doctor seemingly changed his mind about everything and no longer seemed to care... basically a case of "I did my part, she's not my problem anymore." Why would he seemingly completely lose interest in helping me make decisions and telling me more about my condition. I also had light period spotting for the forst time in nerly two months since he changed my birth control pill and less than 2 hours after the spotting I got rectal bleeding again. Am I wrong to want more answers and more information? I feel like I walked away from my post op with more questions than answers... should I go back and ask more questions of that doctor/gyno or seek a second opinion. Or should I just try to move on treat my endo with bc and focus on finding a gastroenterologist who can figure out and treat my bowel symptoms?

6 Replies

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  • I would switch gynos because this one seems like they're not that supportive, my gyno is only nice if my moms in the room, if she's out she's a b-word, but I know she's a good surgeon so I'm sticking with her till after surgery.

    If you get the colonoscopy as an emergency surgery (from what I've read) then it means it won't be a long period so it might be a good idea to go through your doctor right away.

    Lupron puts your into menopause and the progesterone works to counteract the effects, also take calcium supplammets.

    Adenomyosis can effect chances of getting pregnant. However there is nothing you can do about it because the only treatment options are hormonal them a hysterectomy to take out the uterus. It does add to heavy flow.

  • I also chose this Gyno because he is a really good surgeon with great reviews and specializes in minorly invasive surgeries and laparoscopic surgery. In my first appointment and pre-op he really seemed to care and like he wanted to help me find answers and he put effort i to taking time to answer my questions then post op he couldn't get out of the room fast enough...like complete 180... so idk what his deal was. Thanks so much for the info on the Lupron and the Adenomyosis I appreciate getting some information on it.

  • I had a colonoscopy 3 days after Xmas, and I'd only seen my doc less than 2 weeks earlier. They are now high priority, so you should not have to wait. It was quick and painless and everything was okay. The strict diet for 2 days, then ! day of fasting, plus then total 'gut' clearance was ... interesting. But it was good to have worries removed.

    As to the hormone situation, have they ever suggested a mirena coil? This may not be suitable for you, but for me it was a life-saver, for over 5 years. Also, has anyone suggested you see an 'Endo Specialist', rather than general gynae? your GP should know the full protocol and referral procedure. Hope this helps and that you get some relief soon.

  • Thank you! I am hoping I can get some relief soon too. I really hope the colonoscopy gets scheduled asap just so i can relieve some of the worry of nothing else.

    I have tried Mirena to help my period symptoms before I knew I had endo even, unfortunately my body did not have a good reaction to it. I will have to look into other options if the pill isn't effective going forward but I am so glad Mirena helped you feel better! I am sure it's a huge relief to feel so much better, I'm happy for you. I will have to figure out what will work for me with a bit of trial and error and I will take your advice in seeking out an endo specialist to work through this.

  • The NHS operate BSGE Clinics that specialise in Endo, and GPs are supposed to refer you to them if the endo is bad enough. Read on here about BSGE clinics, and talk to the advisors at 'endo UK' - link to their website at the top of the page, where you can search for refs to BSGE Clinics, and find the contact details to talk to someone. these clinics are even better than a private Endo Gynae, as the entire unit is set up around dealing with endo, so they have bowel and urinary etc (endo) surgeons on hand, for when the endo has spread to such regions, where expertise is needed to remove, most gynaes will leave these areas.

  • Thank you!

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