Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Charixma 09/17/2016

Hello All, Just had my very first laparoscopy yesterday with confirmation of endo which we had long suspected. The doctor even said that "your organs were sort of stuck together on the left side." It's such a relief to finally hear that you're not crazy, this was not all in your head and your pain is actually real.

However, I still get the sense that, even despite all of this evidence, my pain is STILL being downplayed by my doctor. I also have to go to pelvic physical therapy because my muscular-skelatal system in my pelvis is, perhaps due to the endo, spasming and strained. About an hour ago my doctor called to check up on me and was astonished and livid to hear that I was down to 5 tablets of painkillers.

He said that he had only prescribed them to be used AFTER the surgery, not before. I was speechless. I truly thought he had just been refilling my current prescription of the painkiller... I had obviously gotten confused and my partner, who was in the room with us when he was orginally writing out the prescription for me, did not realize they were for post-surgery either!

After he was finished scolding me over the phone, this thought occurred to me: how in the world did he think I was managing my pain up until the surgery happened in the first place? I was experiencing breakthrough bleeding as well so the pain was squite strong and he also knew of this. The whole reason I was having the surgery was because I was in pain in the first place! And yes, we used all kinds of NSAID's to help but to no avail. We tried everything but nothing else worked. Only the Norco's. They were the only thing that could help with my pain, unfortunately.

I've gone from feeling guilty all morning over this for taking a narcotic when I technically was not supposed to and then feeling angry at him for not understanding how much pain I was in and still am! I feel like I've been constantly fighting to get my pain recognized but to no avail. I want to get off this pain medication as soon as possible too; I want to be healthy again and I'm not thrilled about having to take it in the first place. I'm also not thrilled to constantly have my pain thrown back in my face as if it were all in my head. Can anyone else relate to this? Has anyone else felt their pain was essentially swept under the rug? Do you have a doctor that listens to your pain and doesn't put up a fight like mine does? Amy I going crazy? LOL

jokelly88 09/19/2016

Hi, im sorry you are going through such a rough time.

I am due for my first lap in approx 12 hours. I cant sleep i am so nervous about the morning. I am neevous about being told there is nothing wrong with me.

I dont wabt ti be told its in my head.

Will keep you updated. Hugs

emma_brad 09/21/2016

I feel your pain at all of this I've had it for 12years now and hopefully it won't return I've had 3 laparoscopys and there questioning if to send me for a fourth however a recent mri scan has revealed that I also have pcs aswell, tell them it's like being in labour but ten times worse and that they wouldn't give pain relief for mothers to be during labour, I ve said all along I'd rather give birth every day then put up with the pain I get. Think positive and I wish you a speedy recovery.

ashleyeliza314 09/22/2016

Unfortunately, I've been told by several specialists that narcotic pain relief for endo is not the preferred method of treatment. I have had three laparoscopies and pain management has been difficult but because of the risk for addiction and the fact that narcotics aren't meant to be a long term treatment method, it isn't ideal for endo. I switched to non-estrogen birth control (implanon) and added an oral dose of the same hormone to further suppress my estrogen and that has helped with pain immensely. Besides NSAIDS and hormone suppression, there's not much you can do. It sucks but the pain is part of it and because of the risk with narcotics, you usually just have to find what works for you. I know that's discouraging but it's the truth. Learning to find a way to cope with the pain and getting a good support system is important. The truth is though hormone suppression tends to be the preferred way of managing the pain because narcotics treat it so well that it is just easy to get hooked.

ashleyeliza314 09/22/2016

And yes, it often does feel that your pain is being swept under the rug but it's because there is so much liability for doctors right now overprescribing narcotics due to the risk. However, I have learned that usually they do hear you and believe you but are just being careful. I understand how frustrating pain management is

zoeluv 09/25/2016

Hi I had a laparoscopy 2 years ago, and despite the "cheery" tone of my doctor and pain pills it was a long hard road to recovery. Only to feel the endo growing back, I wish I could help you say that it gets better, I myself stopped the pain pills early on, Advil did more help but in fear for my liver and kidneys I now use my heating pad and castor oil packs for the inflammation it helps (maybe placebo) but I'm a resigned to the idea that I will do w this until after I have kids and choose for a hystorectomy (which I suscept is not the easiest route). Lots of luck in pain management.

LawyerGrace 11/12/2016

The only way I can work is with opioids. I hate it, but I have no other options. Pain is not normal and you should be able to treat it. It's not like you are just taking pills and not trying other options. Sorry you're dealing with that Dr. on top of all your other symptoms.
The whole issue of taking meds, being treated poorly due to it (by doctors, pharmacists, ext.) is nearly always the topic of conversations at therapy. If you can, I recommendend seeing a counselor with knowledge of endo and related issues we face!

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