I'm taking my life back. You will not beat me

I've had enough. Endo has ripped my life apart and I'm sorry to say I let it. But not anymore!!

When I'm "well" I'm the most patient, kind, thoughtful, fun person to be with but when the endo symptoms kick in I'm depressed, anxious, angry, sore, exhausted, bloated, constipated, I don't sleep, I don't want to socialise, I shut myself away from people, I've let endo take over and I let it beat me, I let it make me believe there is no hope, that no treatment will work, that I am stuck with this. I have reached the bottom now the only way is up.

The doctor upped my anti-depressants this week and I met with a councillor to talk about how this been affecting me and to try to help me come to terms with it. It was great to talk it over with someone who listened and didn't just say "oh that must be awful" or "yeah I have bad periods too" or "oh it will be better when you have kids" etc. She helped me to realise a few things, things I already knew deep down but had become so negative about everything I really couldn't think clearly. I'm feeling on top of the world, probably the tablets kicking in, for the first time in a long time I'm not exhausted. I've had a day of no pain and thinking clearer.

What I didn't realise was that when I decided not to burden my friends and family with how I was feeling I actually stopped talking to them about anything. I was so sick of the sound of my own voice, of me moaning about being unwell, how the hell did they feel? So when they asked how I was I would say "yeah I'm fine" and leave it at that. I stopped talking to the people closest to me, I shut them out, I pushed them away. I avoided them. I cocooned myself, I wallowed in self pity, had constant fights with myself, telling myself it's going to get better (how could it get worse?), there are women out there who have beaten this why not me? but endo would always rear it's ugly head taunting me making me believe that this is my lot, get used to it. Put up and shut up.

I'm waiting for my referral, the consultant asked me to try the coil again 5 months ago and if there was no improvement she will do another lap. I'm going to insist on this I am going to start fighting again. I will continue to refuse any hormone treatment. I want to get to the route of this and not mask it with medication. I want to get rid of this disease once and for all and will do anything to achieve this.

So Endo you have a battle on your hands. You are not getting to break me, I will fight you every step of the way. I owe it to myself, I owe it to my nearest and dearest. I want to start living again and enjoy life, I want to be normal again, I want to be that nice, fun girl again. She's in there (somewhere) and she's bursting to come back.

16 Replies

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  • Well said dabba76! You mentioned you had a day of no pain, is this due to the anti depressants? How was your journey finding the right one of these medications? I have only tried one in my lifetime it just made me more out of it and nauseous, I am so afraid of the side effects. It was about 30 years ago, I don't even remember what it was called. I worked at a pharmacy then it was like a prozac nation at the time but that wasn't what I was given. may I ask which one is working for you.

  • Hi I take citalopram (selective serotonin reuptake inhibitors (SSRIs) they increase the amount of circulating serotonin available in your brain). I started taking these tablets in 2009/2010 when my symptoms started. They just worked for me, lifted the depression and anxiety. The doctor said take these for 6 months 1 year max but here I am still on them. I managed to decrease the dose 2 years ago but unfortunately I've had to double up again. I don't think the tablets are having any effect on the pain. They have made a difference with the fatigue.

    I'm on my 2nd day no pain and it is bliss. I attribute this to a combination of the coil (?!?!) exercise and a very strict diet. Since cutting out wheat/soya etc I have had a marked improvement in pain. Before I was in pain almost everyday maybe had 1/2 days a month with no pain now I can go a week with no pain. Unfortunately it always comes back at ovulation/lead up to period and during my period. I have a short cycle 22 days so it feels like it's never ending.

    I'm not recommending anyone take anti-depressants but they have helped me get through and I will stop/wean myself off as soon as I can.

  • Thank you, I too am on a very restricted diet I am due next Thursday to see a specialist for a second opinion after the first one declined to do a lap. He wanted me to try GnRH or Visanne. I am like you not interested in masking the pain or doing myself more harm. Just want it eradicated from my body so I can get on with my life.

  • Best of luck with that. Can you let me know how you get on? I'd love to hear how it goes.

  • Sure thing, please do the same.

  • I know exactly how you feel.

    I am just reading Woman Code by Alisa Vitti...i really think it is the best book ive read on endo...so am going to give her recommendations a go for4- 6 mths and see how i go before i commit to hysterectomy

    all the best

  • I will have a look at the book. Thanks

  • I have cried reading this post...thank you! I share with you so many of your thoughts on endo!!! Thank you, thank you thank you!!! Xxxx

  • HI Ladies, by the notes Im reading on this forum there are so many young women with endo. Which just cracks me up because most of the material out there written about endo says women 30-40 years of age. B.S. I mean really probably mostly written by a man. I am 49 years old now and was diagnosed with endo at 18 and had the first Laperotomy at 19. I went through a few doctors. The first 2 were men and finally I wised up and interviewed my 3rd doctor a woman. I wanted to make sure she knew as much or more about the disease than I did. What happened with me was, that even with birth control it grew back every year. The doctors would go in and burn it off and it would come back. I had a standing prescription for pain killers which left me even worse off. Bloated, pastey white over weight and angry all of the time. After 5 years ( 5 laps and lots of cysts) and educating myself on the disease as best I could, I had a sit down with the doctor. I begged her for a hysterectomy. The reality is there is no cure for this disease. I figured it this way if I wanted a child that badly then I would adopt or foster. Endo is one of the leading causes of sterility in women. For me I chose life and to start living it. After the hsyterectomy at the age of 24 I was started on hormone replacement therapy. These days there bio-identical hormones. More choices. Endometriosis is not something that can be fixed by a diet or cured by having children. Its your body and you have to choose just how much you are going to take. If you doctor is not helping then get another doctor but do your homework. Change to someone with experience. I was not in the UK when I was going through this so I dont know how your system works. However you have an advantage with a forum and the internet you can find who has the experience and knowledge. A hysterectomy doesnt change that fact that you are a woman. It changes who is in control of how you want to live your life. There is an excellent book by Louise L. Hay and its called "Heal You Body". In this book she shows you the mental emotional connection to the dis-ease in the body. I wish I knew about it back in 1989. I know about it now and am happy to share any other information I can about my journey. I only found this forum because I am writing my story and part of my story is endometriosis. It was only a 5 year chapter but had a huge impact on how I delt with doctors and medicine. I am open to anyone with questions.

  • Hello,

    I can't tell you what a relief it was to read your post, to hear someone so strong and positive. I have been suffering from endo from what feels like the first day I started my period. I have had four lap surgeries, one round of IVF and a miracle child as a result, but am now a week away from a total hysterectomy and am 35. I don't know a single person who has had trouble conceiving or even struggled with painful periods and feel totally alone. I have tried the endo diet, hypnotherapy, homeopathy, heart healing, yoga, literally everything and now feel totally at the end of the road. I have always been so strong and positive going into my surgeries but this time I feel terrified. I know I can't have anymore children and am so blessed with my little angel, but I can't help feeling like my body has failed, I have failed as a woman, let down my husband and my daughter and that although I won't be in pain physically anymore the psychological pain will be worse. Now I am panicking and thinking I would be better off putting up with the physical pain as I am not sure I can cope with the emotional pain of having a hysterectomy.

    I have no one to talk too who really understands and am making myself sick with anxiety about my op, booked for 6th January 2015 and whether I am setting myself up for more pain. I would so appreciate any advice and my heart goes out to all of you who have suffered from this terrible disease x

  • I can only speak from the experience that I had after the hysterectomy. I freed my body of the physical pain and became stronger for it. I would say focus on that. You and your body didnt fail. Just because a woman can not bear children does not make her less of a woman. You exist not to bear children. You exist to experience life to the best of your ability. There are many things I cant do physically but that doesnt make me less whole. I would say think of all of those things that you will be able to do when you are pain free. The energy that you can focus on your relationships and people around you will be so much lighter with out the pain. Make sure that after your surgery you talk to your doctor about hormone replacement therapy and if you have them available in your country try the bio-identical hormones. Its very important to keep your endocrine system balanced. By the way you are far from being alone in your situation. Keep reaching out.

  • Thank you so much for replying to me, I have never posted on a website before and am so touched that people are responding to me. You are the first person who has been positive about the hysterectomy, I have been advised to use the HRT patch which apparently is better as your body absorbs only what it needs. Maybe I should try and speak to the consultant again, he is just so blunt, hysterectomy or nothing. It is just so final, but if I can't have children then what is the point in living a half life just so I can have a womb. I just go hot and cold on it all the time, I guess it is just pre op nerves. Thank you again x

  • Hey I am just checking in to see if you are feeling a bit brighter about the operation. If you have any questions I am happy to help but I am only one person. Ask everyone you can.

  • Such a relief to be reading all these stories. I am Mrs 'in control' and everyone always thinks I'm fine, but reading this I am starting to admit that I'm not, and its okay, and okay to be nice to myself and ask for help. I know wat you mean about being sick of your own voice! I just found out today my surgery last week needs repeating again due to crap communication before hand, and although I finally told friends about last week's before it I almost can't be bothered again. I guess there's worse things we could be dealing with too. Thanks for sharing :) Onwards and upwards ladies and where's the blinking chocolate!?!

  • ive not long been diagnosed and its hitting me hard but you have certaintly opened my eyes and will start too fight this. i get married in five months time and endo is already ruining my life i dont want to be like this on my special day. i said to my consultant about changing my diet and he said it wasnt proven so there was no point. its got to the point i can even exercise or anything! after reading this i wont be giving up so easiliy in future i need answers!!!

  • Hello, When I was 36 I developed sever endometriosis. I was in my final year of a Graphic Design course, so it affected my marks at the end. Luckily I did pass but not as well as I had hoped. This was in 1983.

    For pain relief I was prescribed Ponstan forte (Mefenamic Acid ) this took the edge off and allowed me to function. Like many of you I resisted the idea of a hysterectomy. Then the endometriosis got so bad, the doc said I would be dead within a year, because of all the internal bleeding.

    When I was waiting to see the Consultant, I passed out and an operation was booked. So I didn't have much choice. When the operation was over, the Consultant was really happy as there was "no disease" I assume he meant cancer. when they opened me up they found my insides were "choc a block" with chocolate cysts and other stuff right up as far as my lungs. A right mess in fact.

    They had inserted an HRT capsule to last six months. I didn't notice any pain apart from when I coughed. They did say it would take three months instead of six weeks recovery time. To anyone hesitating, I would say go ahead, what have you got to lose but the awful pain?

    The ovaries, fallopian tubes, uterus and cervix were removed. The cervix was removed to save having smear tests. I probably had adhesions from a previous operation too.

    I had the hormone implants until the age of 45. They were inserted near my navel. I had Premarin oestrogen only tablets for a while after that. Probably until I was around 50.

    I understand the biological urge to have children and it is very difficult to accept. I was lucky as I already had three, but it didn't stop me feeling broody at times. The fact is if you have very severe endometriosis, the likelihood of getting pregnant is slim. Even if you did, it would be incredibly difficult to bring up a child when you are in constant pain.

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