Is it endo, or am I over exaggerating?

Hi. I'm a 20 year old female in a bit of a pickle. I've always knew I was different. I didn't get my period until I was almost 15. I was sitting in health class in 8th grade learning about how puberty works, and felt a sharp stabbing pain where my right ovary was. I could hardly put pressure on my leg to walk the rest of the day. I didn't think much about it except, "maybe my period is finally going to come." Sure enough, no more than two weeks later my first period arrived. It was painful, and very heavy, lasting seven days. For about a year after that, all my periods were pain free, light, and only lasted 5 days. I have, however, always felt pain during ovulation time. Lately, within the past two years, my pain started picking back up once for a few days around ovulation time, and once for a few days around the start of my periods. I started spotting between periods, I have back pain, and as far as walking goes, once every three-six months I can't walk at all without wanting to cry, but work must go on, so I deal with it. I went to my women's health doctor, she said she didn't think I had PCOS, but she never did an ultrasound or anything. She just dismissed all my symptoms. I tried the birth control patch to regulate things, but found I had chest pain, irritability, and extreme shortness of breath. I took the patch off and have been fine since with those few symptoms. My mom and grandma both had PCOS and endometriosis which makes me think all these symptoms are not just "mittelschmertz." Does it sound like endo to you? I want to convince my doctor to quit playing around, and just give me the procedure to diagnose what is causing all of this. I don't want to spend years trying to find the right combination of medicines to work if I don't really have endo. I'd prefer to get the laparoscopy done, and go from there. What do you think? I also feel like I've been to my doctor for a whole mess of things, and she looks at me like I'm faking. As far as my womens health doctor goes, I haven't seen her in a few months since I got the patch prescribed. Should I bring up my new concerns and force her to listen to me?

10 Replies

  • I forgot to mention. My periods are irregular in the fact that they come anywhere between 24-39 days.

  • Hi - where in the UK are you?

  • I actually am not in the UK, but I really like this thread, and there are so many women here dealing with the same things. This is the first post that popped up on the topic of endo. I'm in the US actually.

  • Hi again - can you click on my name and look at my post on rectovaginal endo to see if you identify with it. Endo is autoimmune-related and is known to run in families. You may have other autoimmunity in family members. Essentially endo appears to try and prevent pregnancy in whatever way it can and it has been suggested that the increased pain often felt at ovulation in women with endo is yet another string to its bow to stop women wanting sex at ovulation and thus avoiding conception. Can you give as detailed a description of your symptoms as you can both at period time and at other times.

  • It doesn't really sound like rectovaginal endo to me. The biggest reason I because I get most of the pain on my right side. Symptoms include:

    During ovulation:

    *spotting (spotting for three days now, never in my underwear, but always there every time wipe.

    * constipation

    * lower back/pelvic pain and SOMETIMES sharp pain shooting all the way down my leg. Pain in back is on both sides, pelvic pain changes depending on what ovary is active I would assume, and leg pain is ALWAYS on the right side.


    *other symptoms come and go

    Symptoms during period:

    *Passing of small, but regular blood clots

    *5 day period

    *from end of last period to start of next period can be anywhere from 24-39 days.

    * severe cramping in pelvis, not relieved by pain meds, but is relieved by heat.

    *Irritabilty, dizziness, lightheadedness(pretty much everyday whether on period or not)


    *back pain

    *other symptoms come and go

    I've never been pregnant let alone had sex, so I don't know as far as painful intercourse or infertility go. I also have mother and a grandmother who had to have a hysterectomy due to endometriosis. I have normal blood pressure sometimes, and high blood pressure at other times. Temperature is fairly normal at all times, as is heart rate.

  • Force them to listen to you- if they don't just keep making appointments and pestering them until they refer you to a gynae doctor. My pain started when I was 12, a year after my periods began, and I would be going to the doctors and hospital at least once or twice a month trying to get help. I was only diagnosed last year with endo after they found a large cyst in an mri of my hip (I had the scan for different reasons) and was red-flagged to the gynaecologist. I felt like you too- I felt the doctors thought I was faking it because I practically lived at the doctors office! I even began to doubt myself and whether or not it was really that bad (it was). Don't let people dictate your health to you- if you think something is wrong I'm sure there is! I also have the leg pain that makes me unable to walk sometimes which is caused by nerve damage caused by endo, definitely speak to your doctor!

  • Thank you. This makes me feel less crazy. I feel like everyone I talk to thinks it's related to stress, and anxiety. For all I know, sure it might be... But I don't remember feeling stressed when I first got my period, so I HIGHLY doubt it's the reason. Could nerve damage also be the reason of slight to moderate back pain?

  • No problem :) and no, stress and anxiety would not cause abdomen pain like that, chest pain yes of course but not abdomen pain (unless it's gas). and yes nerve pain can manifest itself in quite a lot of places. It usually presents itself as very sharp, shooting pains, radiating outwards or a "numb" pain. I'm not sure what the health care system is like in the US but I would look around online for a good gynaecologist who perhaps specialises in endo in your area!

  • The thing with my healthcare is I get to see whoever they refer me to, otherwise I pay out of pocket.

  • Maybe you could tell them you feel they are neglecting their duties as doctors to provide care for their patients. You just have to keep pestering them, took me 7 years and I wish I had gone sooner! Thankfully for me my mother is a nurse and had a lot of connections and people she could speak to for advice. If they don't want to refer you then ask them to perform a blood test known as CA125- this is a tumour marker for ovarian cancer however it can show other womb irregularities. If it's over 30 you will need to see someone. (Don't panic if it is, it doesn't mean you have cancer it just gives the doctors an idea of what's going on and forces them to perform more investigations!

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