Endometriosis Support--Welcome! - Page 3

Mazie · 07-15-2005, 09:42 PM

Tiggamoo ~ Thank you so much for the gift! I'm new here and still trying to figure everything out. When the rainbow showed up under my name, I had no idea where it came from. I was thinking maybe I had reached a certain post count or something. When I went in to change my mood, I noticed your message and that it was a gift. Thanks again!!! Hugs!!

paisleystar · 07-16-2005, 12:38 PM

Hi guys Thanks for all of the information about endo. I didn't have heavy bleeding until this week before it was only a light discharge. I won't be able to talk to my Dr until Tuesday. Anyway I am still having bad cramping too. I was hoping that would be better, but so far no luck!
Hope everyone is feeling better today. Have a nice weekend.

Bert · 07-16-2005, 02:57 PM

My nurse practioner thinks I have endo. I was just wondering I am on the pill and some people say they have been put on the pill to control endo. When I asked the nurse if it was possible to have endo and be on the pill she said yes. Is anyone else on BCP with endo? I have most of the pain on my left but my right too. My internals as well as my transvaginal ultrasounds bring me to tears when they press on my ovaries and back towards my rectum. The pain is a dull ache most of the time but at least 1 to 2 times a day I get a flair up that radiates pain down my leg. I also have pain in my lower back. I also have to frequently urinate and it hits fast like one minute I feel like oh I have to go pee and the next it is like I am going to pee my pants if I don't get there right now. The nurse told me that before they would do lapo to check for endo they want to do a test on my bladder to rule out interstitial cystitis (because of the frequent urination) and then they want to send me to a specialist to have any intestinal problems ruled out. I have the pain all the time though not just when I have gas or right after I eat so I don't know why this is necessary. This is keeping me from getting the ball started because I don't work summers because I work for the school system and it is cheaper to stay home summers with my kids than to work and pay for daycare so I don't have the finances to have all this testing done. In the last month I have put maybe 500-600 dollars of my own money into testing even with insurance. I had to have an ultrasound and blood work done at my PCP and then when she sent me to the specialist (the lovely nurse practioner I can't stand still have yet to see a dr. at the gyn office) she made me have more blood work and another ultrasound by their person. AHHHHHHHHHHHHHH This was in the matter of 2 weeks time. She also did do the blood work I requested for PCOS but did it knowing I was on BCP for years and that it would mess up my results and when I asked she told me no it wouldn't. AHHHHHHhhh. Also, she did ask after doing my internal if I ever had my cervix operated on? I don't know why she asked. Can they tell endo by the feeling of your cervix?

theflyingturtle · 07-16-2005, 05:03 PM

Endo is supposed to stop the pill but sometimes it can increase your problems instead of decrease, the idea is if you take ti continusouly you don't have periods. I can type more later when I am more coherent if someone else hasn't answered by then. I just woke up from a nap.

princess5 · 07-16-2005, 08:02 PM

Hi - how are you all today?

I took the pill for 3 months with no stop and then off for af and then 3 months again. This was supposed to help the endo but unfortunately it didn't - it did however make my PCOS worse when stopping bcp altogether! I think they reason that endo can get better in pregnancy so if you stop af it's kind of doing a similar thing with your hormones - sorry i can't be any more informative than that!!

I wanted also to ask you guys what sort of painkillers you are all taking? Over here in the UK they have stopped making my usual pills and now i am stuck as to what will help! Anything over-the-counter is not strong enough - just curious to see what you do to deal with the pain?

Hope you are all ok!

Mazie · 07-18-2005, 02:25 AM

princess ~ I'm pretty lucky. Advil usually works for me. When my back pain is at it's worst, I have to take 4 pills at once (800mgs I think) but it usually takes care of it. I hope you can find another medication that will help you!!

Bert ~ I've been told bcp's sometimes helps with external endo but I'm not sure why. I know they are supposed to help with internal endo (IE) because they keep your lining thin which in turn doesn't irritate the IE as much. I can totally relate to stubborn NP at the GYN office. My PCP referred me to the OBGYN part of the clinic when I decided it was time to start IF testing/tx and I was given an appt with their "fertility specialist" who happened to be a NP with "special training in IF". She was a JOKE! My PCP ended up doing all the testing for PCOS because the NP ruled it out since I have AF every month even though I have soooo many other things that point directly to PCOS. I suggest calling the drs office you are going to and speak with a nurse about getting an appt with a OBGYN. Tell them you want to see someone with a medical degree and not some half @ssed assistant. Remember, you pay them so they work for YOU. I know it's hard. I wasted so much time with that NP. But now I know how to stand my ground. ((HUGS)) I wish I could call them for you can give them a piece of my mind!! I hope you get this resolved soon!!

Hugs to everyone!!
Mazie

Tiggamoo · 07-18-2005, 12:39 PM

Good morning, ladies! I'm thrilled with the response and glad you are all here. Hope you all have a good weekend too. I'm doing a little better today. Occasionally, my left ovary feels like someone squeezed it really really hard. Otherwise, I'm ok.

Flyingturtle, sounds like you got similar results that I did from your lap. I know it can be hard to keep taking BCP regularly. Which one are you on? I'm on Seasonale. It comes in a packet of three months. It's set up so I only have a period every three months. That's more convenient but it seems to be working with my body better. I really admire you for your running. I don't know if I could ever do that. I struggle to stay motivated.

Mazie, your are very welcome for the gift! It just meant so much to have support that I wanted to give you something.

paisley, I'm glad the info helped. I'm so sorry about your bleeding and pain. I hope your dr. appointment goes well on Tuesday and you'll have some answers soon.

Bert, I was also put on a BCP to help control endo. I'm on Seasonale which means I have a period every three months. It's more like taking it continuously with only four periods per year. The idea is to regulate the growth of the tissue that lines the uterus and that usually decreases the amount of menstrual flow. I understand that as long as you are on BCP it controls much of the pain but when the pill is stopped the symptoms return. I've not stopped BCP yet so I'll find out about that when I do to TTC. I'm so sorry about your pain. Before my lap, much of my pain was on my left side with some on my right. I remember having a transvaginal ultrasound months before I had my lap and that did hurt so bad. That hurt then and for a couple days after! I have had and continue to deal with pain in my lower back that does radiate down my leg. My gyn explained that my muscles were tensed in response to the pain from the endo. The muscles in my pelvic area were tensed from the pain so often before my lap that minimal pain will cause the muscles to tense even now. Before I had my lap, I would have to frequently pee. I would become so uncomfortable if my bladder got the least bit full. After my lap, I learned that endo had grown under my bladder with put irritation and pressure there. I really don't know if endo can be felt by touch your cervix. My gyn was able to feel the tenseness of my muscles but I don't know about that. Oh girl, I know having dr. appointments, tests run, and having a lap are expensive even with insurance. After my lap, I had to make a payment plan with the hospital to pay off the amount that insurance didn't cover. That bill was a shocker! It's so important to find a dr. that will do their best to help you.

princess, I take my BCP continuously with AF every three months. Did I understand that you take three months off the BCP and then three months on? That seems like it would screw up endo and PCOS doing that, but I'm no dr. I've understood from other cysters that when they've stopped the BCP the PCOS symptoms tend to come on stronger. The BCP masks the symptoms. As for painkillers, I've taken orudis before to try to knock out the pain. It got to where nothing I took helped the pain before my lap. It tended to help if I took a warm bath or kept a heating pad on my back and tummy. I do take a flexeril to help with muscle tenseness. That helps tremendously. I hope you can find something that will work for you.

I hope you all are feel as well as you can today! I'll check back later.

leahdione · 07-18-2005, 02:35 PM

Hi gals! Hope everyone had a good weekend. I will do personals later! I got a cold or something and am pretty much staying in bed!

Tiggamoo · 07-18-2005, 03:28 PM

Leah, take care of yourself. Hope you feel better soon!

paisleystar · 07-18-2005, 06:48 PM

I am currently takin Yasmin. My dr gave me 3 packs on my first visit with him, it was given to me to try and get my cycles under control. That was before my lap and endo was discovered. That is why I don't understand why I am having all of the b leeding problems that I am experiencing at this time. The Yasmin worked wonders for me the first 2 months that I took them. I only bled during Af and not in between. This last pack I have bled everyday, and this will be my last week of active pills. I can only imagine what it will be like next week.
Did the lap take ya'll's pain away? I am still experiencing bad cramps and am tired all of the time. I have vicodin to take, but how are you supposed to take that and function properly at work? I also don't want to become addicted to them.

Tiggamoo · 07-18-2005, 07:24 PM

Paisley: Hmm, you had your lap back in June and the first two months yasmin worked fine so after your lap you are bleeding outside the time you would have AF......I'm wondering just how severe your endo was. It may have more to do with that than yasmin. Since you said your dr. appointment is tomorrow that would be a good question to ask about.
My lap did take most of my pain away. I do have times that I'm uncomfortable. Of course, you are still healing from your surgery. It may have been difficult to remove all the endo with it being so severe. Some of the bleeding may be your parts healing where the endo was removed. I can only guess but I hate that you are in so much pain. I would imagine that some of the side effects of the vicodin are making you tired. I don't know how anyone could function taking that regularly. Definitely address that with your dr. too. My prayers will be with you as you look for answers.

paisleystar · 07-18-2005, 07:36 PM

Thank you so much Tigamoo! You are such a sweet and thoughtful cyster! My gyn said I had a severe case of endo, he said he ablated most of it. Who knows?

Tiggamoo · 07-19-2005, 11:54 AM

You are welcome, paisley! I hope your appointment goes well today.

How are the other endo cysters doing today?

princess5 · 07-19-2005, 12:49 PM

tiggermoo - i don't think i explained myself very clearly!

i took bcp for 3 months and then had 1 month off for af - and then was 3 months on again. But i stopped taking bcp 2 years ago and then my PCOS symptoms flared up badly - so since then really i have been trying to sort those out!

Hope everyone is feeling ok today!

Tiggamoo · 07-19-2005, 02:42 PM

Princess, I'm sorry I misunderstood. I would imagine you have been trying to sort that out. Sometimes I wonder how much of the PCOS and endo can truly be straightened out.