Does this sound like endometriosis today?

Posted , 5 users are following.

So I'm a female in my early 20s and my periods started when I was 15. At the start I ranged from having no pain/ cramps to mild cramps but one day I had a period suddenly which was agonising and I vomited/ almost fainted. Ever since then periods have been excruciating. I get cramps but they are not the problem, the issue is I get a very intense sharp pain in a very localised area in my lower right abdomen. Because of this pain on my first two days, I literally have to crawl to the bathroom (which is literally just outside my room). The pain that I get from that is enough for me to vomit repeatedly, turn white as a sheet, almost faint, shake, sweat and I have to lie on the bathroom floor for at least an hour until I can build up the strength to crawl back to my bed. Urination is agonising too.

Over time, I developed similar symptoms during ovulation - pain in the same area, vomiting, feeling faint but they are not as intense as on my period.

For this I used to take mefenamic acid, cocodamol, tranexamic acid and buccastem which I either couldn't keep down because of the vomiting or it didn't even touch the pain when I could. Eventually I went on the pill and symptoms disappeared. (However the pain is gradually coming back after two years).

I have been in a relationship for a year now which is active. Despite having lost my virginity a year ago, using a lot of lubrication, always used protection and spending a lot of time before, it's still very painful during the first ten mins with either a sharp pain or burning sensation on all of the lower regions (inside and out). Enough to make my eyes water.

I've had ultrasounds before which have shown no cysts. Any sufferers on here think this is like the symptoms they get? Do you think this is endometriosis?

Also I don't know if relevant but for the past 4 years I've had almost daily nausea (no pain though) and loss of appetite. Could this be a symptom?

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  • Posted

    To you*?
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  • Posted

    It very well could be signs of Endometriosois.  You'll want to talk to your physician, but it sounds like you already have.  Imaging studies may prove useless, especially if you don't have any cysts.  You could still have the disease, there are various stages, but they don't mean much when it comes to pain.

    Some people who have Stage 1 Endo (the least invasive; no cysts) can have the worst pain.  And some people who have Stage 4 Endo (the worst) can have zero pain.

    The only way to diagnose it is to see it via surgery.  Do more research on those signs and symptoms of Endo.  Pain with sex is also a sign, as well as what you described with your menstrual pain.  

    And be pushy with your doctor wink 

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  • Posted

    Sounds like you're having it really rough with all those symptoms. Have you ever let anyone bundle you off to a doc when you're in that very worst pain, white face, etc? Sounds like torture but docs often become much more engaged when they witness such stark agony.

    I am 62 and had a total hysterectomy at 27 so am unfamiliar with your meds. The daily nausea also sounds awful and is a symptom. I wouldn't try to hazard a guess. I admire you for carrying on. If it were me, I'd have the laparoscopy. I remember that lying on the bathroom or hall floor and I'm ashamed of the entire medical profession that all you young women still have to become as intimate with your flooring as with boyfriends - different intimacy but it's still intimacy. Don't be surprised if you're sent for endoscopy & colonoscopy, too.


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    • Posted

      The only time is last year when I hadn't taken the pill for a month (after a few years of being on it) that I'd forgotten just how severe the pain is. Anyway I ended up in A and E because it was so bad I couldn't get up off my bed and I thought I had an appendicitis. Every bump in the road literally make me cry out in pain. When I got there, obviously they found I didn't have an appendicitis and was put on IV painkillers overnight. Had an ultrasound and then one of the doctors said I didn't have endo but I said you can't say that because the only way to diagnose is via laparoscopy. Ultrasounds only really show cysts which can indicate it. Anyone he brushed that comment off and I was discharged so rolleyes
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  • Posted

    Hi Applepie, 

    I'm sorry to hear your having such terrible symptoms but yes they are all symptoms of Endo (cysts or not).  It could be something else or a combination of things but if its not Endo then its something else.  

    The only real way to diagnose Endo is with a laparascopic surgery.  The Dr. makes 2-3 small incisions in the abdomen and uses long thin scopes (thinner than a pencil) to look inside your pelvic area.  If there is Endo to be found, they remove it  (opt for excision rather than ablation which burns the tissue with a lazer). It sounds like you have way too many symptoms to ignore and should see a knowledgeable Dr. or Specialist.  Many regular gynocologists don't know enough about Endo to be able to help, so make sure to ask if they can talk to you about it when you make your appts.  

    Please dont do nothing though because things these tend to stay or get worse and I'd like to hear that your quality of life gets better.  LMK what's happening smile


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    • Posted

      Thanks smile yeah after about 5 years of having seen the doctors about it they've finally agreed to let me see a gynaecologist. It's one that visits the practice once a month so I don't know if that is a hospital specialist or not? Unfortunately I personally felt in a lot of visits mainly prior to the pill, the doctors weren't taking me seriously and I believe they thought I was just exaggerating the pain. Whether I have endo or not in the end, I can see the difficulty women experience (length of time) to get diagnosed.
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  • Posted

    To help allevite your pain.  I have the following suggestions.  

    1. Get some fennel seeds and saffron.  Put about 10g of fennel seeds in 1.5 cups of water, bring it to boil and then bring down the heat slightly but keep it boiling for about 15 minutes.  Turn off the heat and then add ~0.2g of saffron to the decoction, cover it and let it sit for about 5 minutes.  Drink the decoction with the saffron when it has cooled to a temperature that is safe to drink.  Your pain is likely caused by poor blood circulation in the local area within your body and this decoction will improve circulation and likely reduce or eliminate pain.  Note that is it not advisible to take saffron if you are pregnant.

    2. Try to put something warm over the area of pain.  If it helps, keep it there.

    3. For your nausea, try ginger with honey.  Put a few ginger slices in water and bring it to boil, then boil for about 3-5 minutes.  Add some honey and drink the ginger tea.

    Hope that helps.

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