Avatar universal

Diagnosed with endo during laproscopic surgery, severe pain

Hello, I have always had painful periods but didn't think much about it until it got worse since 2013. I saw few gynecologists regarding pelvic pain, severe pain in lower abdomen but they didn't pay much attention. I had gallstones and underwent surgery for gallbladder removal. I requested the surgeon to check for endometriosis during the surgery since I had doubts that it may be endo. Had the surgery on Jan 11th, endo was found and adhesiolysis done. After surgery I had my periods twice and both times the lower abdominal pain is far more worse than before surgery. I'm unable to eat, walk do anything much. I can't travel in cars without crying due to pain. I saw a gynecologist yesterday and she said I should have informed her about the surgery and that she had to present to diagnose endo. I still haven't recovered from the recent surgery and she hinted on another lap for a proper diagnosis.

My main concern right now is the debilitating pain which is making it hard for me to do my chores. I have pain regardless of whether I'm having periods or not. Starts 2-3 days before periods, lasts till day 10, again from day 13 to day 20, last few days it may be present or not. This happens every month. If the pain is bearable I wouldn't concern myself over it but this is worrying me, making me depressed. It effecting my sexual life, I feel pain during sex but recently my bf is very worried, doesn't wanna have sex cuz it increases the pain.
I have been in lot of pain since August 2015. I can't eat anything due to pain and have lost 20 lbs in past few months. Lost 10 lbs after surgery. :( I'm feeling very weak and I'm underweight.

Gynecologist told me she can't put me on any pills as I usually take anti psychotics, antidepressants etc. Suggested I exercise and take painkillers when pain is severe.
Can anyone give me some tips on pain management? And is this pain normal in endo? Any tips on nutrition or things I can try eating or drinking?
8 Responses
Avatar universal
Hi, I'm sorry to hear your in pain, but there is a bright side. In most cases endometriosis can take years and years the diagnose in my case I have symptoms from 11 years old was not diagnosed until I was 22, but now that you know you have it you will have to accept that at the moment there is no cure, this is not the end of the world, there are treatments
Please excuse the poster BlurAmber as her response came across with no compassionate or facts.

I am sorry to hear what you are going through. I understand why you would have asked to check for it while they were in there but probably not a good choice having them remove any of it because it is not their specialty.

Do you have the report with the diagnoses? Did they take samples of the endo? Please make sure you get that report as it will be helpful in the future.

The only way to diagnose and treat is through Excision surgery which is when they cut out the disease from the root. Laser will only get the surface of the disease and someone with Endo skill or knowledge could miss blatant endo and would not know where to look in common areas.

That being said I would suggest that you leave your Gyno as she doesn't seem to be helping and go to an Endo Specialist. Let me know where you live and I can find you one in your area.

As for meds nothing suppresses or gets rid of endo but excision surgery so the reason you are feeling pain is most likely because they aggravated the active endo and it wasn't removed properly.

Once you have surgery properly with a specialist you will need to combat the disease after that with pelvic floor therapy, dietary changes, exercise and depending on what you prefer HRT.

Medications commonly used to treat endo are Lupron, Visanne,  and various birth control pills.

In my journals you will find my posts about all these different meds that I have taken as well as a link to my endo blog.

For me after a good surgery I used Marvelon21 which is a low dose BCP for 8 yrs continuously so I only had breakthrough bleeding 3-4 times a year and it worked very well for the endo pain.

Because it took me 14 yrs to be diagnosed I had irreversible bladder, bowel and rectovaginal damage. Not everyone will have to go through what I did and every case is different but the faster you treat the disease with someone who knows what they are doing the faster and closer you will come to recovery and less pain.

There is no current cure for endo but there is a lot more research now being done in regards to why certain women get this disease while others dont, and why some with minimal disease are in debilitating pain and others with severe disease are not and vice versa.  

If you have any more questions please ask me. I am always here to help. xoxox
Don't excuse someone you do not know, you may disagree but to excuse, it is just rude. What you foresee as compassion is a personal judgment, you do not know me nor do you know how others will take the post, so in future please refrain from assuming I or anyone else is being incompassionate. This is not your call to make.
Avatar universal
I'm so sorry to hear what you're going through. Endo really is such a debilitating disease! And it's really tricky and confusing how it presents itself and how women feel pain. I think the reason you're having more pain right now is because you just recently had the surgery. I read and was told that the first couple periods are very painful after because everything inside is sore. If you do decide eventually to have another surgery, go with an endometriosis specialist. You can search for one near your area online, or might even be worth traveling for it. They are better at these surgeries, they've literally done thousands of just endo surgeries, they know how to get it out with the root, and where to look for it. I hope you feel better soon!
Avatar universal
thanks for being such an endo warrior and answering everyone's questions! It helps women a lot :)
136956 tn?1425606272
Actually it is my call to make. It is not about disagreeing.

This board is for people looking for help not being told "It's not the end of the world" because it is for some people as well as a triggering comment. So yes I will excuse people when I feel its necessary.
136956 tn?1425606272
Thank you :)
Avatar universal
I will try to find an endo specialist in my city and get an appointment once I'm in less pain and can travel. I think we have an endo center which specializes specifically on this. I hope I can find a good doc there who can help. Thinking about another surgery is making me depressed. I don't have medical insurance and need to pay for everything in cash. It's rather expensive. In my country if you take health insurance, they only cover bare minimum for first two years. So even if I get insurance it isn't helpful as of now.

I'm making changes in my diet. I'm vegetarian so I'm only making few changes like adding more nutritious foods and watching out for foods high in phyto-estrogen like soy products.

The pain is still the same. I had a talk with my bf about my health and future plans about having kids etc. We are still discussing various things like treatment options, surgeries etc. Bf said no matter what he plans to stick with me. I was scared he would leave me. We may get married soon and that's the only good news. It made me happy though I feel awful cuz of pain.
I'm currently tracking my pain levels everyday to get an idea of when to expect it so I can pop a painkiller before it hits me. My doc told me to take painkillers "before" pain starts. Until I find a specialist I will have to manage myself with heating pads, rest etc.

Doc told me to exercise but I can hardly move on some days. I'm still struggling to add exercises on regular basis.

I miss my good old days when I used to dance :( I hope I can dance and play with my dog like before. Currently only playing fetch.
Avatar universal
Thank you very much :)
136956 tn?1425606272
Many people including myself have done the "diet change" including Paleo, vegan, endo diet etc.. List goes on. Some found improvement I did not. Well I can't say I didn't. When I did paleo not having grains at all did help my bowels.

Do you need help finding a specialist in your area?
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