Any help would be appreciated

I’m sorry to rant but I don’t know who else will understand how I feel. I have stage 4 endometriosis and after 5 surgeries including a bowel resection and an ileostomy which was later reversed, life is getting more and more difficult. I'm currently divorced and living alone, working full time in a very difficult organisation. We're going through a restructure and I’m facing possible redundancy. Lately my body refuses to cooperate with me. I go to bed tired and wake up more exhausted. I’m taking Yasmin to keep my period at bay to control the endo. I take gabapentin for nerve pain and oramorph for the rest of the pain. I’m also on antidepressants. I have a good GP and gynae who look after me but it seems they’ve come to the end of their rope as well. I constantly struggle to do the most basic things. I’ve come from being a happy energetic size 8 to a constantly exhausted and emotional size 14 going on 16. I feel like my friends and family don’t understand what I have to go through on a daily basis. They look at me and see a healthy looking person and some people assume I’m simply being lazy, a hypochondriac an attention seeker or all three. I keep trying to explain to people but they simply don’t understand. Yes I would like to get up and move around, I would like to go to the gym and lose weight, I would like to have more energy and get out of the house, but I simply don’t seem to be able to do it. I really don’t know what to do anymore. I’ve taken so much time off work for sickness reasons that I don’t blame my employers if they’re tired of me. If I had a partner to support me, I would work part time but I don’t and I have bills to pay so I have to struggle in to work. It’s becoming increasingly difficult to manage everything alone. This morning I sat in the train on my way to work and cried and cried, I didn’t even care that people were looking at me. I cried all the way to work. I don’t know what to do….. I’m so sorry for the long rant…

30 Replies

  • I am thinking you could have adrenal fatigue along with B12 deficiency after all those GA's using Nitrous Oxide which interferes with B12 absorption also OCP depletes B12.nerve pain ,emotional upsets-anxiety.tiredness,breathless after excercises memory loss. ,B12 is one of the highest misdiagnosed illnesses.Dr told me I was okay 250 should be >500.Was offered antidepressants refused.I take food supplements( Neolife )Melantonin to sleep ,B5 for adrenals as have low cortisol levels.Do hope you have good Gp who listens.

  • Where are you located? And do you have private insurance? Do you also have thyroid disease on top of the endometriosis?

    It is SO awful to feel so awful and not have anyone around you understand or believe you. I have been through a similar period (tho' not as extreme as your situation). It's good that your GP and gynae are sympathetic, but it sounds like there is more going on that needs to be addressed.

  • I'm in south east London. I haven't been diagnosed with thyroid disease but I will have it investigated. I have private health insurance. I just want to have my life back. Thank you for your help. Will keep you posted.

  • Hi Has your thyrlid been tested/ i should imagine it has, but were the tests for TSH 4 and Free T3. it is often the wrong diagnosis if all 3 are not done. Endometriosis is autoimmune too, also common with thyroid disease. have you had a diabetes test recently. ?also as said, iron/ferritin, vit d, hormonal, if low a calcium test, then treatment on a script, B12 +foliates need to be high in range Have you seen a good Endocrinologist? I thin k it would be a good idea any way, they deal in all hormonal and endocrine conditions. For this reason a good one is the most knowledgeable specialist there is!

    Thyroid is often mistaken for depression.

    if you have not had the 3 thyroid tests, you an have them on line, Blue Horizon are well known to docs, all DIY if you use a finger prick test. It does mean paying but worth it. There is a discount if you quote TUK 10.

    You know something is wrong, you need to find out what \s you are in the best place to know your own body,

    Best wishes for a good recovery,


  • Thank you so much guys. I will definitely get my GP to run the suggested tests. I really need to get to the bottom of this as its taking over my life. Yesterday, after having terrible headaches all day, I collapsed at work and was brought to hospital. I'm hoping for the best. Thank you so much. It's really reassuring to know that I have friends out there who genuinely understand.

  • I am very sorry you have been so ill. It is amazing how so many people eventually discover they have a thyroid gland problem. I don't wish it on you but it is a possibility.

    Most people do not understand how unwell you can be, especially as you have had quite a few problems.

    These are some links for info:-

    When you get your thyroid gland blood test done, get it as early as possible as your TSH will be highest. Your GP should also do the other blood tests suggested.

    Always get copies of your blood tests for your own records and post them for members to comment.

    Best wishes

  • Thank you. I feel so relieved to hear from people like you ho will reinforce my the fact that I'm not imagining these issues and its not in my head.

  • Hi ladypenelope, so sorry your feeling so low sounds like many of us on here and you should ask you doctor for blood test for thyroid. I to take gabapentin for nerve damage after back surgery. Your not going mad and some people out there who don't have the problems have no idea how your feeling. Let us know your blood results after you have them. Try a bit of relaxation music that helps me a lot to relax. I've been very tearful and know how your feeling. Maybe it's time for you to think about giving work up. Good luck.

  • Hi there, I'm so sorry you are feeling so low both physically and emotionally. It sounds like you have a lot to deal with. I agree with all the suggestions above and would just add that cutting out dairy and gluten may have a hugely positive effect on the endometriosis. There is an Endometriosis Uk forum very similar to this one where there is lots of info. I have gone gluten free for my hashimotos ( autoimmune condition which effects thyroid) and feel so much better for it. There is a big difference between an intolerance and a sensitivity. I do not experience any bloating, pain etc when I eat wheat so I deff don't have a intolerance but my body just seems to work so much better without it. Best of luck and hope you feel much better soon. X

  • Is it possible you are also hypothyroid or have Hashimotos

    Endo is auto immune and with one auto immune comes another plus many Hashis people also have severe endometriosis as my daughter and grandaughter do

    get your GP to test

    thyroid antibodies


    free t4

    free t3




    then get the figures and reference ranges and pm me for more help

  • Thanks, that's really helpful. I will get cracking right away.

  • this is so interesting, I had bad endo for years and now think I have an underactive thyroid.. just had bloods done etc and im "borderline" so GP put me on 25mcg of Levo and feel bit better.. but she now thinks its hormonal and wants to take me off of it!! yikes!! I had a hysterectomy 5 years ago cos of the endo.... x

  • ...I agree with reallyfedup that you may well have Hashimotos - Auto-immune Thyroiditis. Auto-immune illnesses usually go hand in hand. I have Crohns and Hashi's. Also agree with giving up gluten to heal the gut which is often the source of auto-immune issues. Gluten molecules can travel far and cause inflammation - even in the brain.... So you have had lots of good advice and I sincerely hope you will soon feel well enough to take action. Keep posting and people will keep supporting you.

    The Anti-bodies that need testing are Anti-TPO and Anti-Tg for Hashimotos. To hasten things along I would use the Pivate lab on the main website of Thyroid UK....

    Meanwhile take good care. I have had loads of bowel ops and spinal surgery ( see profile ) - fortunately I do not have to take any pain relief - but I do practice yoga three times a week. Gently does it and it's a great healing tool....helps to bring balance to the Endocrine system through the chakras....I know all too much for you at the moment - just when the time is right for you...

  • Thank you. I feel so much better just reading all these response! I'm not imagining things! It's not in my head! I will definitely try yoga and keep you posted.

  • LadyPenelope, it's a good idea to give up Gluten AND dairy, but you may have other food sensitivities, too (lettuce is one of mine, for example). Try investigating the Autoimmune Protocol, or a book called Clean Gut, or find a really good functional medicine practitioner (ideally one who is also an actual MD). Also keep in mind that if you decide to 'try going gluten free' for a week, you will likely feel rubbish and give up before you uncover anything. It can take a while to clean your system out. That's why it's good to do it with some guidance.

  • Thanks molliemdz I will look out for the book. It's amazing how much help I've got from this site. It's really great to talk to others who have been or are in my shoes.

  • hiya I've been there myself you don't say how old you are but have you considered asking for a hysterectony I had mine at 29 and life became much simpler after it and the pain went completely good luck

  • I'm 36 divorced and no children. I have lots of endo in my bowels so I'm not sure the hysterectomy will make the pain go away.

  • They've messed with your ileum, this is where vitamin B12 is absorbed, and your symptoms certainly fit. Much more info here:

  • Hi so sorry you are feeling ill and at the end of your tether, I understand. I have a long history of endometriosis and now have an over active thyroid so I have a foot in both camps! I dont know your situation in regards to having children but I had a hysterectomy at age 29 which cured the endometriosis. Twenty years later I have started with thyroid problems.Is a hysterectomy not an option gor you atbthe moment? Letd clear one point up you ase not a hypochondriac, you are not attention seeking and you are not lazy.You are battling a real condition one that is painful and draining anf trying your best to deal with holding down a job and getting through it.If someone tells you that you look well tell them its not your face that hurts! As you get older you will realize who is really interested in your welfare and who is not.It took me till nearly 60 to work that out.A handful of people care and I tell them the truth. The ones who call me lazy etc behind my back I tell them I am tip top! I understand I believe you Best wishes x

  • Thank you so really do understand how I feel. I will just ignore the ignorant people who don't understand. It's so good to talk to people like you who understand. God bless you.

  • I understand have long history og endometriosis and now overactive thyroid.Is a hysterectomy not an option?

  • I am sorry you are going through all of this. I don't know what you are going through medically, but emotionally I understand. My family and friends and other people see a normal person on the outside when inside I can barely function. I have hyperthyroid, vestibular migraines, vestibular issues and a rare condition that affects my eye sight... Nothing on the outside to let them know I am sick. With luck we can find good people who will listen to is and try their best to understand or at least sympathize with us.

    I wish and pray for all the best for you and your health to improve!



  • Thanks Candi. We will continue to fight till we win.

  • Amen to that!!! :)

  • Please get your thyroid checked again, T3 and T4 levels. Vit B12 which should be greater than 500, and vit D 2 @ 3 levels

    You can not go from an energetic size 8-14-or 16 without some reason.

    Please ensure that your doc knows how down you feel. Just keep pushing as only you really know what you are going through.

    I do hope that you get your health issues sorted, there is an answer to all health issues, it is finding the route cause that is the problem, not you.

  • Thank you Paulasams. It's an uphill task but I will keep pushing until we find a solution. I can't continue like this.

  • Hi LadyPenelope, have you asked your doctor if you can try another antidepressant? It might be this that's causing you to be so down (believe it or not). I was on one that turned me into a zombie and my weight shot up (two stone in three weeks). The painkillers could be another cause, especially with antidepressants. Have you checked the side effects of all these? It could be mild sedation. Your body's probably fighting very hard against all this. It might be quite exhausting.

    Just some suggestions.

    Take care

  • Thanks Tericotta, I will look into the antidepressant, I forgot a about that. Too many medicines to keep track of.

  • Hi, I can really sympathise with you. I suffered from Endometriosis for years and had 5 laps to sort it out! I luckily had a daughter 6 yrs ago and then a full hysterectomy at 38 so am now sorted re the endo. But, I now have lots of symptoms I believe are Underactive thyroid ones and my Dr has put me on very low dose of Thyroxine, the tiredness was horrendous! was feeling better and now they've upped my HRT (Estrogen patch) and now I seem to have all the symptoms back again and horrendous legache and backache which im guessing is hormonal - hope its not endo back coz of my patch!!! Anyway, I can relate to you and I hope you get some anwers and help xx

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