Struggling with Endometriosis Symptoms and Lack of Libido

I do not have an actual endo diagnosis yet but I was interested in getting the opinions from people who have it as I have been trying to get help for the past 2 years and the gynos I’ve been seeing tell me it’s “all in my head” but I know it isn’t. I have most symptoms for endo and it runs in my family….but my main concern is my complete lack of libido. I started birth control for the first time about 3 years ago. 1 year into it I completely lost my sex drive and it hurts to have sex. I stopped taking BC but it has never stopped. To the point where I had to cut sexual intercourse out completely so I can avoid the pain. I have had 2 appointment with gynecologist since in the past 2 years and both times they said I “looked perfect” and that I should try therapy. But I KNOW something is wrong. It’s even more uncomfortable for me to sit through an appointment. I have another appointment coming up where I will request a sonogram. Has anyone else had this experience? I’m really at a loss I don’t know what else to do…

Your answer

Em05xx

1y ago

I am in this exact situation. I hope u dont feel alone

E11iefant

2y ago

I have Kaiser insurance (literally the worst) and I’ve seen multiple gynos in the last year. One said “unfortunately we can’t help you unless you’re trying to get pregnant.” I replied “that’s an interesting way to treat a progressive disease.” She then said “my sister has endo and I wish I could help, but Kaiser’s policies won’t allow me to.” So honestly it’s probably not the gyno that’s the problem, but rather the hospital policies. Which makes a lot of sense, I don’t know how else doctors would ignore our pain.

Chloex

2y ago

I went to gyno before I really knew what endo was so I told them all my symptoms and they did the normal check up and said I “looked perfect”. I told them it doesn’t feel “perfect” and one said to try therapy since she sees nothing wrong

LadyTavali

2y ago

It took me two years and several doctors and gynecologists to get my diagnosis and surgery. My first gynecologist I had when it all started left the practice. His replacement was horrible and she refused to listen to me and what I needed. Sent me to GI who had me do completely unnecessary tests “just in case” even though they were 99% sure it was GYN related. They sent me back to GYN but I transferred to a new one who dug around a little bit and kept monitoring me. COVID happened and my options were birth control and waiting. Restrictions lifted and I was able to schedule surgery which then totally confirmed that I had horrible endo that they couldn’t even fully clean up. So I have an IUD now to limit my symptoms because they don’t want to give me a hysterectomy just yet even though I’m about to be 35 and have a child about to be 17 with no real way to have another child as I’m single to boot.

Chloex

2y ago

I’ve read that birth control is a way of “helping” end but I just recently stopped taking it this year as I feel it made everything 10x worse for me. I’m hoping after my appointment this coming Saturday I can finally start getting some answers. Now that I’ve read into endo and talked to people with same experience as me I am going to really voice my opinion about it this appointment.

EmiEmi

2y ago

Your story sounds like mine to a tee. I lost my sex drive entirely before my endo diagnosis. For me I think it was more mental because it was so painful to have sex. my body would tense up and I would have extreme 10/10 pain during sex, so mentally sex just wasn’t something I ever wanted to do to avoid the pain. I finally went and saw a pelvic surgeon who specializes in endometriosis, had surgery and the pain is essentially all gone. my sex life is now better than it’s ever been. If I was you I would make an appointment with a pelvic surgeon who specializes in endometriosis and pelvic pain. It changed my life.

Chloex

2y ago

wow this is exactly like me!!!! I’m definitely going to thank you

Skelliosis

2y ago

One thing I've honestly said to a doctor that got some tests going was "No sh!t it's all in my head, our brain, in our heads, is what gives us the signals that we're pain, if you were a real doctor you'd know that." I sadly wish more doctors took us seriously, but do not give up on your health, ask for a different doctor and keep mentioning it until they listen because if it gets worse and they ignore it, they're technically refusing to treat someone which is sort of idk ILLEGAL, i pray you find a helpful gyno and are able to progress with treatment in the ways that you need because you are deserving of a life without pain 💛🎗

WhatADay

2y ago

Yes your pain is real and I am sorry you feel unheard or unseen - Please do not give up on yourself and believe one day you can find a gynecologist or any doctor who will listen and try to help you find the source of your pain, it just seems to take a sadly large average amount of women approximately 10 years to get diagnosed with endometriosis and/or adenomyosis so please do not give up yourself and update us again soon - I would like to suggest searching for as many second opinions as you have to through patient reviews of ob/gyne’s listed on ZocDoc and thru Facebook on Nancy’s Nook

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