I'm 23 and believe to be suffering from Endometriosis, I was diagnosed in Jan 2009 after being rushed to hospital with abdominal pain. I'm

Just wondering if everyone that is diagnosed with Endometriosis has had a laparotomy? As I didn't have one, I struggle to get a Dr to emphasise with what im going through enough to help with treatment. I'm on the pill purposely for Endometriosis but still get serious pain from time to time. I loose noticeable weight in the week of my period, I can't eat yet vomit a lot I get a high temperature but most worrying I get excessive depressive thoughts and sometimes suicudal. Does anyone get these symptoms too? Need some help and support as family and friends somewhat brush off endometriosis as if it not a serious condition.

Last edited by

3 Replies

oldestnewest
  • Hi Leah, I'm sorry to hear what you are going through. I too get depressed with having endometriosis and suffer with ongoing and unpredictable anxiety attacks that make me feel low. It doesn't sound from your post that you have absolute clarity on your endo and the extent of it. Knowledge really is power and just knowing that you have it and where it is means you can own it and do things to improve your quality of life. If your are not getting answers from your doctor then get a second opinion. I would also suggest looking at your diet as foods such as sugar, wheat and dairy all contribute to inflammation in the body which can make your symptoms worse. Taking vitamin C helps inflammation and Higher Nature do a great range of supplement to help with upset. Balance for Nerves, Drive and Positive Outlook are all ones I can recommend. Good luck

  • Hi Leah1990

    So sorry to hear you are so down, take a look at the following link to Endometriosis UK's publications,

    endometriosis-uk.org/public...

    There are lots of different publications which may be useful to you, including a pain and symptoms diary which is incredibly useful to fill out and take with you to your next doctors appointment. There are also publications explaining a bit more about endometriosis which may help friends and family understand a bit more about how your feeling.

    Really hope this helps,

    Regards

    Emma

  • Hi Leah1990,

    Sorry about the really long reply...! You sound so overwhelmed by this and I'm not surprised. There is a way to navigate through all this and ratchitt is right; knowledge is power.

    You won't be brushed off here! I echo emmajane127's reply and encourage you to spend some time having a good look at their online guides.

    It sounds mad but GPs are often out of their depth when dealing with endo symptoms. We have to help them to help us and be proactive and firm if we meet resistance which appears to have happened with you.

    You are correct; the only way to get a confirmed diagnosis is via a laparoscopy or laparotomy (The former is common as it is less invasive). Some hospitals can diagnose via MRI too but this is not that common yet.

    What you need to do is find an endometriosis specialist near you. If your GP suspects endo then a gynaecologist will not be sufficient to treat you. Find an endo specialist here ...

    bsge.org.uk/ec-BSGE-accredi...

    or if you can't find one, a provisional centre here...

    bsge.org.uk/ec-BSGE-provisi...

    Choose one of the centres and request a referral to the centre from your GP. You have the right to choose your specialist on the nhs. This will make it easier for your GP. You might need to convince your GP that you do need a referral. As mentioned by emmajane127, keep a pain and symptom diary and include when you are feeling low/suicidal. even doing this will help you feel like you are starting to gain some control. Print out any articles on the internet that might help support your case to get referred. Some of the guides on Endometriosis UK will help convince your GP. Present everything as clearly as you can.

    If your GP still refuses, the next course of action is to go to another GP at the surgery or change GP altogether for a second opinion. You have the right to do this. Don't give up. You really need to push for this.

    In the meantime, do all you can to help your body deal with your condition. Ratchitt's advice on diet is really good. There is plenty of great information on the internet on diet and alternative treatments that could help you. Some people have had great success with alternative approaches but it's not an instant fix and doesn't work for everyone. Have a look at this website by a woman in NZ. It's full of warmth, positivity and great information...

    cureendometriosis.com

    Another great site...

    endo-resolved.com

    If nothing else, finding ways to support your body will help your mood too and strengthen your body to cope with any surgery you might have.

    I truly don't believe there is a single woman out there with endo who does not suffer mentally as a result of this condition. The pill you are on is not helping with your physical symptoms and is possibly contributing to the onset of your depressive thoughts. The pill only masks the condition, if at all.

    With regard to your family and friends not being supportive, get them to look at this video of Lizzie O'Leary, a former CNN reporter talk about her experiences endofound.org/video/My-Endo...

    Another poster on another thread shared this and it's very good.

    Concentrate on yourself for now. Post on this forum for help and support. See if there is an endo support group in your area endometriosis-uk.org/find-l...

    There isn't one near me but I'm considering posting on my town's facebook page to see if anyone would be interested in me starting one.

    Posting your concerns here is a really positive step. It shows you have it in you to conquer this and deal with it.

    Hugs to you xx

You may also like...