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Update on surgeon appointment. Family did not come..

Nov 04, 2015 9:29 PM

Hello all..ive made back from my first appointment for the treament of thr tumors. Well. She gonna start me on progestin. Which is suppose to stop the tumors from growing. She told me that I still have at least 8 medium tumors that are attached to several blood sources. Which is why she could not remove them during surgery im recovering from because I would have bleed out. She is gonna try to get me past child bearing years but she feels I'm gonna have to have a full hysterectomy at some point . she also fears that pregancy would be very dangerous . so when I get home of course my mom and sister are waiting on me. And they want to know all that happened. I did record the visit but mainly I just told them what all was said.
So now we all are having to process and then decide if I'm gonna go through the treatment or simply have another surgery.

Nov 04, 2015 10:24 PM

Did you and your doc talk about progesterone vs progestin, just wondering because of some studies that point to some unfortunate side effects of progestins.
Why didn't your family (or 1 person) come with you?
Just seems like it would be nice to have another set of ears for deciding what to do.
I'd be nervous, and I hope you can figure out what option is best for your body.

Nov 04, 2015 10:27 PM

If you elect to go on the progestins, please do not be alarmed if you start to breakthrough bleed on them. I had that experience before surgery, and it darn near freaked me out. Otherwise, I've not had any issue with it.

Nov 04, 2015 10:30 PM

@ ferretbandit..yes .we did it was decided to my age and family history that progestin would be the best to try right now. As for family I was very nervous and upset that my close family did not go. This appointment was three hours away my GOD sister came with me. But she went shopping while I was with the Dr. The Dr asked me why I was alone too... My mom had to stay with my sick father and my actually sister I suppose was to tired to go with me. As for my decision. I'm still processing I just had surgery four weeks ago but I also don't want to walk round with blood sucking tumors.. Ha..

Nov 04, 2015 10:34 PM

New, have you discussed Mirena with your doc? I know our situations are not exactly the same, but I think that's what I might be discussing with mine in January. Needing something that I don't have to take a pill everyday and I can just forget about it.

Nov 04, 2015 10:39 PM

Hi ..amanda..we did however I can't take one of the ingrt in that's one. But thanks for the idea.

Nov 05, 2015 6:39 AM

New fibrogirl, I know it's a pain having to go it alone, I have been there twice because my family was in another state and my ex had to watch our kid's and I really only had one friend at the time and he is a single father of four wonderful girls and of course he had to be their with his kid's.

I will pray for you and that if you do go down the pill road you have better luck than I did. And if you elect the second surgery I will pray for help for you and a nice relaxing complications free recovery and surgery! Been their with surgery 4 weeks apart...First was an appendix removal then he thought he saw a hernia while in there so I went ahead and had that removed, except it was a bunch of scar tissue from my c-section from 2004 that he fixed. I got dropped off at the hospital that morning and they had went home and ended up coming to get me ( I was an hour away) just know we are in your corner what ever decision you make! Prayers for you again newfibrogirl. 🙏😘💕

Nov 05, 2015 8:53 AM

Newfibrogirl, I am so very sorry that you had to go through this traumatizing appointment all by yourself. I know what that's like. I've gone through a few surgeries going to the hospital alone. It is scary and traumatizing. I hope that after you have processed all of the information given to you by the doctor, that you listen to the recorded appointment again just to make sure that you didn't forget anything. Sometimes, your brain kind of shuts down and you miss things when you're given such information that is life altering. I hope that you know we are all her to support you and comfort you as you need it. I am sending you {{{Hugs}}} and prayers that you make the decision that is right for you so that you can live the best life you possibly can. I'll be praying for you and in here when you need me. 💕🙏🏻🌻

Nov 05, 2015 3:43 PM

Newfibrogirl, (((Hugs))) for the bravery it took to go to that appt alone! AlwayZ advice to listen to the recording is a great idea. If you hear something you don't remember and you have questions then you can write them down and notify your doc. When I was 1-2 mos pregnant I went alone for my US, only to be sent to the hospital for an ectopic pregnancy. I can still remember my mind whirling and feeling like I was going to pass out, all while crying my eyes out. Thank God, it was a fallen ovary, and I have a beautiful 27 yr old daughter as a blessing! Did the doctor mention Depo shots to shrink the tumors? That's what I was given in 2002. The shots shrunk and dissolved/burst one, but the other didn't stop growing, and it ended with bilateral oophorectomy.

I may be wrong, but this is what was explained to me when Ii had mine. Cysts & tumors must have a blood supply to grow. If the blood supply is stopped the tumor should be easily removable. In 2010 they removed a 10 cm mass from my pelvis, along with scar tissue, endometreosis, hernia, & appendectomy. I kept having unidentified pain in the pelvis, legs & feet. My GI doc sent me for a dye MRI, which picked up pelvic congestion syndrome (PCS-engorged pelvic veins). I had to go to Savannah, to the only PCS specialists in our state at that time. The next closest was in NC. They went down the main vein at the clavicle, towards the kidneys and down to the genial organ area. That's where they sclerosed/embolized and closed off 11 pelvic veins with titanium coils. When I awoke I could feel immediate relief of pain & pressure. The doc said if they hadn't closed it off, with such a readily available blood supply, I would have likely developed another mass(es).

I don't know if this is something that you would benefit from, but it certainly can't hurt to check into it. It would be handled by Vascular/Vein Specialists. You need to take your time and make sure you're ready before doing anything that can't be reversed, like a hysterectomy or any other surgery. Check out all your options. We're all here for you. I'm saying a special prayer for you. 🙏🌼

Nov 05, 2015 3:56 PM

Yes..we did speak of depot however I'm concerned about weight gain so she went another way. I've gained a lot of weight In the last year and of course i know it due to the huge amount of tumors I have but still I really don't want to add more weight. But I will also look into those other idea u gave me. Thank you so much. It's hard to keep going back and forth with the hope and then disappoiment of have children. I want kids of my own and its like one moment yes u can and then the next no u can't or if u do u might die.. My Boyfriend has two kids and we have been together for 8 years so he has said I already have two kids. Ha...I love him for that.. But still it's hard... I don't really know what to hope for anymore.

Nov 05, 2015 8:50 PM

Newfibrogirl, you're welcome. Pray about your hearts desire and trust. With God, nothing is impossible! 🙏🌼

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