Recently diagnosed, struggling to cope atm. Any advice please?

Hi,

I recently got diagnosed with Endometriosis and I'm really struggling at the moment. I've had problems since i was a teen and it took years to finally get diagnosed after a laparoscopy. Unfortunately my fiancé of 4 years and i broke up 4 months ago because i was in a lot of pain and it gave me severe anxiety and depression, i just couldn't cope and so it destroyed our relationship. I'm still grieving about it all. I'm currently signed off work again because i now have a cyst on my ovary and I'm starting to just lose control of my life, people say just push through the pain but it's not that easy. I just don't know what to do. Is there any advice you have to help manage it, the pain? I've lost so many jobs over it and now my partner. I just feel so lost.

9 Replies

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  • Sorry to hear you're struggling but know what you're going through. I too am in daily pain and basically lost a job just recently too.

    My GP finally gave me tramadol that helps the pain.

    Also I'm on anti depressants - amitryptiline can help with pain too.

    Also ask GP to refer you for some counselling to help - or do that yourself by taking a look on BACP website for someone near you - but I appreciate that's expensive so may have to wait until you get a new job.

    Obviously keep pushing for a gynae at a BSGE centre to actually treat the endo too

    Good luck.

  • Hi there,

    It might be an idea to double check taking those together. I was advised against it as they can interact with each other. X

    Dicloflex tables or diclofenac as a Suppository is quite good for pain related to inflammation. X

  • Thanks

    I have asked GP and they said it was ok. But they've got so much else wrong maybe I'll ask pharmacist.

  • My pharmacist raised it to me first. It's hard for GP to keep a track of it all sometimes and mine really didn't understand endo and how it all worked. My new consultant has now steered me away from tramadol as she doesn't feel it's very effective in the long run.

    I suffer from chronic pain from endo, a retroverted and reflexed uterus which is also enlarged from andendomyosis. after a year on pain meds I found nothing was working for me anymore. I do not take either of these anymore. The amitriptyline actually made me more depressed. The side effects of this drug aren't nice and I decided I could manage without it.

    When my blood pressure sky rocketed from these and the pill my GP didn't even noticed ... I purchased a machine myself and raise it to them and took myself off amiti and the pill (which was estrogen based!! - worse they could have had me on)

    I now practice mediation which has really helped me both physically and mentally. NLP ans mindfulness are both great skills to manage long term pain and emotions. I know it's not for everyone but it's worth a try. xxx

  • Oh no Hun. So many of us endo sisters go through so much and it really affects our lives at home and work. I've suffered years and took me 20 years to get a diagnosis. I was elated and sad at the same time, cause I knew something was not right and it wasn't all in my head. I started AIP diet and am amazed how better I feel. I suffer Hashimotos auto immune disease and found info on this diet which helps to eliminate inflammatory foods and to cut out dairy, gluten and processed foods. I didn't really notice any change right away(but you need to stick to the diet), and my pains and IBS issues are rarely there. I still get pains but nothing like before. I used to take pain pills, antidepressants, antacids, etc. and now I just take my thyroid meds. I do believe a lot if medications too cause side effects. The diet is basically fruits, veggies, lean meats, fish, some nuts like Brazil nuts(which are packed full of selenium), and selenium helps for sleep. Seeds, herbs, etc. I've spent the past 20 years suffering, tests, hospital visits, Drs, and I just felt like I was going in circles. I had endometriomas which are cysts and after surgery they came back. I had stage 4 endo and it was on my bladder, bowels and my uterus was stuck to my intestines. I did have a hysterectomy and do not regret it at all. I suffered way too long. I wish I had known about AIP diet years ago. I believe many foods and our diets are a huge cause for many issues and it all starts with the inside.

  • Hi sis,

    Sorry to hear you're not coping well. I was once in that place too (look at my previous post on profile x) and have almost got to a point of giving up because I didn't have control over anything anymore. However, with the right support and guidance, you can go through this and come out better and braver on the other side.

    First off, sad to say a long term relationship has ended but if he can't handle you at your worst, then you need to have someone in your life who can. I know how much it means to have a supportive partner, but do not forget that you have friends and family who love you and who are just waiting for you to open up to them about your struggles.

    Next, talk.. talk.. and talk some more. Talking is therapy (for me) and the more I talk about what I am going through, the more my brain knows what is real, what is not, and what I have to do to change my circumstances. If you think it's hard to talk to friends and family, seek the help of your GP to refer you to someone who can help. I am currently undergoing one on one counselling sessions (through steps2wellbeing.co.uk/) and I find that it has helped me developed coping strategies for times when I feel like the world is crashing down on me.

    Finally, make yourself the priority. You have only one body - look after it. The money, the job, the relationship, the worldly desires can follow right after you have sorted your health out. Easy for me to say, I know, but if I could give myself the same advice 3 months ago, I would not have come to the point of attempting to end my life.

    I have only been on this community for a couple of days but find that it is helping me realise that there are a lot of women out there who have worse cases than I have and it is sad, but we can all be here for each other to help. xx

    Stay strong girl, you WILL get through this! x

    Lots of love and positivity sent your way,

    Faith x

  • Hi there. I can empathise. For the first time in 20 years I'm having to not work. Lost my job due to Endo and PTSD due to other circumstances although I have battled to stay in work despite Endo for 20 years. Broke up with my partner due to all this and my family have passed away.

    You need lots of support. These circumstances really weed out friends unfortunately but you'll discover who your closest friends are. Lean on them, talk to them, and ask for help. Counselling is so expensive but it's worth looking on Mind's website and IAPT. They both offer free therapy although the waiting lists can be long. Keep posting on here. It's a great support. Xx

  • Sorry to hear of your struggles - I had a very similar experience. A great book to read is Stop Endometriosis and Pelvic Pain by Dr Cook. It covers a lot different treatment options and hope of getting pain free. Xxx

  • Hi sorry to hear of your troubles. Untreated pain can cause troubles of it's own. I have accepted after years of fighting within myself that I just need to take medications everyday in order to work and function for now. I have day medications and night medications. I also no longer identify myself as ill to people I don't trust well or employers as people are nearly always more interested in how this might effect them than understanding or showing compassion. I am a better worker than most more able bodied people.

    I can also recomend becoming your own advocate for yourself for treatment of that pain. Properly treated pain earlier on can help stop progression down the road to chronic pain as I understand it. Only you will know the right medications after trying them as everyone reacts differently. For myself I take several medications together with guidance from my doctor. Taking your pain medicine and getting a break from the pain is showing compassion to yourself. Don't be afraid to tell your doctor if it is not working, or get a new doctor if you are not getting the adequate medication treatments or feel like you are being heard. I also agree with the comments on mindfulness exercises here as a powerful tool to have if you can afford to see someone. Good luck 🌷

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