Waiting for a diagnosis

Hi ladies,

I'm new here...but it's been so nice to see posts that I can relate to! Helps me not feel so alone.

I have been suffering excessively for a long time, and finally my doctor has told me he thinks I have endometriosis and I have a gynaecologist appointment Wednesday to hopefully confirm (after waiting 8 months!).

Ever since 13 when my first period started they were heavy and I cramped the whole way through. I went on birth control pills at 18 and things seemed better. At 22 I went off the pills right before my wedding and got pregnant immediately (I believe hyper ovulated?) and then was symptom free during pregnancy. After birth, I started cramping - a lot - even though my period had not returned due to nursing. When my period came back 1 year postpartum, it was worse than ever. It's been two and a half years of hell. Constant cramping all the time, back pain, sharp stabbing, bloating, hard abdomen, pain during and after intercourse and fatigue. I've gone back on birth control and it hasn't helped at all. I'm at a loss of what to do and at 25, I am just depressed and anxious that this is forever :(

I know symptoms vary so much person to person - but does it seem likely to be endo? I've been so emotional about the whole thing, it's just nice to have a place to get it out! Thanks for reading :)

9 Replies

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  • The only way to confirm you have endo is with keyhole surgery. They cant see it on a scan. It is good that you finally can talk to gynocologist, hopefully they are able to help you and get you on the right track.

    The symptoms sound right for endo, but they have to investigate.

    I know this feeling well. Theydiscovered a large cyst on my ovary finally after going back and forth to the gp for months. At the surgery they found some endo by chance and they removed it. I still having pain now and still not completely well.

    I looked for help with my thought and feelings, because i was an emotional state and was affecting me and people around me. I dont take a pill anymore, but primrose oil and this seem to work.

    I wish you all the best and good luck

    Naomi

  • Thanks very much for the response! Yes, I certainly hope they can book me for a lap right away for diagnosis.

    I have had ovarian cysts in the past as well, but they have always ruptured on their own - but it is certainly painful. I hope you start to feel a bit better very soon!

    Thank you for the tip on primrose oil - I would definitely like to get off of the pills because I don't think it helps anyway, and we would like to try for another baby.

  • Hi - it sounds as though you could have had endo for some years and a common site to become involved is the Pouch of Douglas, between the cervix and the rectum. Click on my name and have a look at my post on rectovaginal endo in this area to see what you identify with. This often involves 'nodules' of endo that are deep and often cannot be seen at a lap as they tend to be hidden by adhesions. An MRI is the standard scan for detecting these or any distortion of anatomy prior to a lap. In view of your name, are you in the UK? You need to be seen by a skilled specialist in endo who can do all the necessary investigations and follow through with proper treatment. Have a look at my post on finding a specialist. x

  • Thanks Lindle. I definitely think it has been going on for years - but as a teenager I didn't know that it wasn't normal. I will for sure check out for more information on the rectovaginal endo, as I also have pain during BM and digestive issues (I just had a colonoscopy and it came back normal).

    No, I am in Canada - but found this forum and really liked it! Hope it's okay I am on here! I was looking for somewhere that I could really communicate with people who understand. I have not been able to find any endo specialists where I am, unfortunately. But I will ask the gyno tomorrow for sure.

  • Hi - this list of excision surgeons in Canada may be of help to you.

    endendoforever.blogspot.co....

    It really does sound almost inevitable that you will have rectovaginal endo and this must be done by someone with specialist laparoscopic excision skills to deal with such complex endo. Here in the UK they must have done specialist training for two years beyond that of a regular obs/gynae.

    This is the guide from the GMC who regulate specialists in the UK to give an idea of what skills are required (pages 29/30):

    gmc-uk.org/ATSM_Laparoscopi...

    Bowel problems are so common with RV endo as nodules are usually present on the uterosacral ligaments that are very close to the bowel, and inflammatory substances given off by the endo cause irritation and IBS type symptoms. This might be useful:

    livestrong.com/article/7823...

    Get yourself well informed of what your symptoms suggest and with RV endo so that you can take control and tell your doctor what treatment you want. If you are seeing a general gyno they may not be very familiar with this. x

  • Thank you SO much for all the info! I will definitely do a lot more research. I just found an excision specialist that is in my own city - that's amazing, I had no clue. So I will ask for a referral if necessary.

    It's funny that the GI specialist who did my colonoscopy ended up saying I had IBS - I think that must just be the explanation they give when they don't know what's going on.

  • I'm so glad it helped and hope you can move forward now. Whatever you do don't let a general obs/gyn operate on you. IBS is the most common misdiagnosis for endo (other than 'in the head') as the Pouch of Douglas is the most common site after the ovaries and tubes, but because it is beyond the reproductive organs and hidden it is often missed. Let us know how you get on. x

  • With lots of unexplained issues aroumd tummy area gps will say ot is ibs, but sometimes there is a different underlying other problem.

    Check it out, read about it, keep a diary with pain complaints and is getting worse before your periods. Is it worse or less in certain weeks then it will be connected with other things and not your bowel. Of course when you get anxious this can make tummy problems worse.

    Make sure they will help you. You want to enjoy life and be able to do things!!

    Let us know how you get on!

    Good luck!

    Naomi

  • Had my appt today! Booked in for a lap on October 15 as they suspect endo. I'm so happy I don't have to wait for longer for surgery.

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