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Avatar universal

Whats Next

Hello,

I am 27 and back in October 2010 I have a cyst removed from my right Ovary. It was the size or an orange. I also have endometriosis. My surgery was a fill invasion surgery. Not laparoscopy. My doctor had initially told me that while she was going to remove the cyst, she was also going to have to remove the ovary. Fortunately, once she started to remove the cyst, it ruptured and she was able to save the ovary from removal. It is now March, and I am experiencing pain again. Last week I went for another trans vaginal ultrasound and the tech showed me that my right ovary is now completely perfect. However, my left one is not. During surgery, she drained two of them that were on my left and relatively larger. Those two have now seemed to become the size of a quarter a piece and there are two additional cysts as well. So four altogether. Since surgery, my doctor had me taking a menopause shot once a month. (Lupon Depot) to put me into a medically induced menopause. My last shot was on January 17th and I have yet to get my period. I am going to see my doctor tomorrow because I am in pain again and obviously it is cause I have cysts again.

My question is, what am I to expect tomorrow? I am praying that I don’t need to go for yet another surgery considering mine was only several months ago.

Any help or feedback would be greatly appreciated!!! At this point, I am afraid she is going to suggest a hysterectomy at this point considering I have severe endometriosis and am loaded with cysts.
13 Responses
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478429 tn?1265244387
Care:
Geesh!! I did have surgery with a specialist, but it was at an Endo Center in GA. I had a supracervical hysterectomy, excision of endo, lysis of adhesions, enterolysis, and an unexpected appendectomy. Did they tell you a little bit of what to expect at your appt. and what you should/need to bring with you? If you have any questions, feel free to contact me :-) Good Luck! Oh, and when is your appt?
Helpful - 0
Avatar universal
i am having the same issues just a bit behind u, im having my surgery in 11 days the first big cyst i had was about 6 months ago the size of an orange and it ruptured and it killed, with endo comes cysts, so you will always have these issues, you may need to have a hysterectomy, but my gyno is implanting an iud type thing it supposedly keeps these problems light and unpainful so thats what im trying if that dosnt work then ill have the big surgery to remove every thing, mabie you should ask about the iud. good luck hun
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Avatar universal
Hello ladies! … I am posting again cause I find some peace here knowing that there are others going through what I am. I know I started my post two weeks ago, but today the story gets better. I went to her on March 22nd. And like stated previously had my ultrasound the week before that. While I was talking to her I asked her what steps she was going to take because my ultrasound had showed that there was several cysts relatively larger on my LEFT ovary this time.  she didn’t really get my any feedback on that and somewhat ignored it. now today, I randomly get a phone call from her office. I called them back and they tell me that they got my ultrasound results back. Ummmm, wasn’t that the purpose of my appt two weeks ago!?!?! I asked them why the doctor did not tell me that she didn’t have the results and that question went unanswered. They told me exactly what I already knew from looking at the ultrasound and talking to the tech. I have cysts again!!! And they are NOW concerned because the two that showed up that are larger look very “abnormal” to them!! They also asked me if I went for my bloodwork. I told them no, cause this weekend I got a period naturally, so clearly im not pregnant. They said that she wants to test me for thyroid and something else. That was never told to me. Also, they asked if I took the Provera that she prescribed. I also said no to that cause once again, I got a natural period. Then they asked about the birth control. And I told them no to that as well, cause I was supposed to hear from their office on how to take it. (even though im not sure if I want to take it at all) She said because of the endo that she was going to talk to the doc to see how she wants me to take it and call me back. So now, they want me to have ANOTHER ultrasound in May. After I have one more period. To then take a look at the abnormal cysts. I have already found a doctor to go to for my second opinion who is a specialist. But I do not see her tell the end of April unfortunately. So, I don’t want to do nothing from now till then, considering I know that I have bad endo and am loaded with cysts. I feel like this is playing more on me that before. It’s a terrible case of déjà vu that I just went through less than six months ago. Any feedback yet once again would be appreciated. Right now my head is in a fog! Lol. Thanks ladies!!!
Helpful - 0
1006035 tn?1485575897
My doc won't prescribe lupron. She says the treatment isn't worth the side effects.

That said, you really do have to shop around for the right doc. Not much is known about endo and most docs don't know how to correctly treat it. Keep your head up and good luck!
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Avatar universal
Thanks hayley! I contacted a specialist today and i am going to see them next month! It is nice to know I am not alone in battling this. I had never heard of this until recently, and now it seems the more people I speak to, the more I hear people dealing with it. Your support has been great and very much appreciated. !!!
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Avatar universal
Oops last sentence went a bit wrong - just wanted to say keep your chin up, you are not alone xx
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Avatar universal
Oh no I was thinking of you all day hoping that you would get some good news, I'm really sorry that your doctor was so useless.  It seems they either know nothing, don't care or want to palm you off on someone else -the doctors are the same in the uk too :( its definitely worth a second opinion and a specialist sounds like a good idea despite the travel!! I think your doctor was slightly right about the pregnant issues, it may take a long time to conceive after your surgery and the medication's / hormones etc. And because of the scar tissue I've been told that it will be hard to carry to full term, although on the positive side it would be worth it in the end :) I kjo
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Avatar universal
I dont like her either!!! I did look and New York is the closest. It is worth a 2-3 hr ride to see someone who is an expert in this field. Thank you for your help! I really appreciate it. I see that you said you had a surgerywith them. If you dont mind me asking, what procedure did you have? Were they able to help you with your endo ?
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478429 tn?1265244387
I don't like your doctor lol! I'm not sure about everything she is saying and no, I'm not a doctor either but it just doesn't seem like she' going to help you much...  :/

I posted a list on this forum earlier today - see if there is one even nearby. I traveled about 700 miles from Ohio to Georgia to see a specialist. I believe there is a group in NY...check out the list, do some research.
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Avatar universal
I went to my doc this morning and I felt it was a complete waste of my time. i think I need to go seek yet another second opinion. She told me that she wants to send me for blood work to see if I am pregnant. (Even though I just went for a transvaginal ultrasound on Thursday and there was clearly no signs of pregnancy. Also, I have been on the Lupon Depot. So there is no possible chance I am pregnant. She told me that after she gets the results back, she wants to put me on a pill that will induce my period since I haven’t had one since December. Then, she wants to put me on birth control. However, strongly suggested that I should start considering pregnancy. She said I have a long road ahead of me if even at all to get pregnant. Does all this sound right?? I feel like she is grasping at straws at this point. But obviously, I am not a doctor and not sure. I think it is time that I go see a specialist for endometriosis, unfortunately, I cannot locate one in my area or relatively nearby. I live in Scranton, PA. so if anyone is familiar with someone, please let me know.

Thanks!!!
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478429 tn?1265244387
I'm sorry you too are suffering with this...I have a thread on here about seeing a specialist, check it out if you have a moment, but here is a website for you to look into and see what might be best for you :-) Good Luck and if you have any questions feel free to ask!

http://centerforendo.com/index.htm  - Check out the treatment, what is endo and the library. I found it to be very helpful and am recovering from surgery with this group.
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Avatar universal
Hayley,

Thanks so much for responding. Honestly, this is all so new to me. Before all this started I knew I had cysts, never knew that I had that large of one inside me. This whole thing has been an emotional roller coaster as I am sure you know. This is the first time I actually shared my story with people that aren’t family or close friends. I am finding out that there are a lot of woman with this disease. I also want kids, and very scared of the odds at the moment. It seems like us woman that have endo also have other conditions! I was told that I couldn’t have kids by a fertility doctor, but his bed side manner was awful. So, I would hope that he is wrong. I am going tomorrow morning to see my doc that did the surgery and she already has me results from my ultrasound last week. Unfortunately, its hard to look at the glass half full walking in there tomorrow.
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Avatar universal
Hi hun, sorry to hear about your experience I too am in a similar situation,  I have been diagnosed with endometriosis,  fibroids, cysts, and ibs. I had a laparoscopy in Feb 2010, unfortunately I didn't get any relief and in fact my pain has also got worse. I recently went back for a 6 month check up, I saw a new doctor who actually seemed to care who is now going to try me with the coil, she said this would release hormones and could relieve some pain. I have been told to consider a hysterectomy but I am only 26 and I do want children so I refused. I have heard of people having up to 12 laparosopies before being pain free. They can't make you have a hysterectomy if that's not what you want, I think they
think this will magically make all our pain go away. Tell them you'd like to hear a LLC the other options before doing something so drastic. Hope it goes OK, let us know xx p.s its always best to take someone with you so you don't end up agreeing to something you don't want. Take care, hayley

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