A year on since diagnosis and still struggling

[KibbsnMeeps]

Similar story to many I suspect: since the age of 15/16 I had terrible pain with periods, this interfered with work and studies, I had a break for a few years with use of Mefenamic acid and Tranexamic acid but then began to react badly to them. Some 12+years on I finally got referred to a gyno and went in to the care of the very capable team pelvic pain at Edinburgh REI and was diagnosed with Endo. I had a merena coil fitted at the same time as the laparoscopy and the very small lesions exercised. I got an infection and have been in chronic pain for over a year. I have learnt to manage the pain, some days better than others, and I've not had to give up anything that I do with work or study. But when the pain is bad, it really hampers life. I feel very alone with it, my partner supports me with it as best as possible. But if this affects 1 in 10 women how come I don't know others? I know more than 9 women! I'm less active then I used to be, find achieving basic things a real struggle sometimes. I'm scared to share the reality of what I live with and experience with new friends or work colleagues. Equally, if I do tell them and theIr supportive towards me I feel embarrassed and unable to be 'normal'. I am angry at not being able to hide it and having to adapt my life to this disease, I thought that I would have found my peace with it by now. Does it become easier?

[NH88]

You cannot find peace with the situation if you cant admit to yourself and others that there is a problem, wheither you deal with the problem and hide it yiu still have the issue. It wont go away that easily.

If you have been diagnosed then at least you know its real and that you have the option to find something that will work for you.

I was suffering since the age of 14 and was constantly given no help explaination or even the support of any professional dispite my older sister being diagnosed with the most severe stages.

I had to take it into my own hands and out if my own expenses to seek help. Even though i was sure in myself that it was endo.

Im not sure what you would like someone to tell you...you say you feel lonely but then you dont want to discuss it with others because you would be embarrassed by them showing support. Are you afraid that their support would be a form of pity?

You say you dont know many women with it but perhaps like you they just dont feel they can discuss it.

We are here to support you. We are here and this forum is here for you to feel free of dicrimination.

If you want it to get easier talk to others about how you feel. And when you are ready find a professional that will listen and help you. Don't suffer. Dont struggle and you dont have to try to put up with it.

My support is with you as is everyone on here who is going through the same thing.

Only you can decide what you want to do. Once you have them it gets easier.

Xx

[NH88 in reply to NH88]

Oh and just to let you know...most people take years to diagnose 7 to 10 years was quoted to be the average and so many dont actually know they have the condition mainly as it seems not many gps know much about it.

Its also not easy to pick up in tests. I had blood tests, external ultrasound tests, internal ultrasound tests, and internal tests....(of which was even more painful due to tilted womb also).

In other words....it may be more common than we all think....but its so hard to "proove" that its not very well known. Although im glad to say it seems to be changing since the last couple of years ive heard it more.

[KibbsnMeeps in reply to NH88]

I'm well read up on endo now and I agree hopefully more people will be able to get diagnosis and help with the more understanding and awareness there is about it.

I apologise that what I was hoping to get in terms of advice wasn't clear in my message. I guess I am hoping to hear that others felt like this, especially in relation to chronic pain and accepting the disease as part of their life to be. I want to know if it got better for others, or if it's always a struggle?

[NH88 in reply to KibbsnMeeps]

Ahh ok.

Firstly you dont need to apologise.

With regards to struggling and it getting better i would guess it varies from person to person depending on their tolerance of pain and the stage of endo they are at. It also depends on how long they've had problems with it and how they've been treated about it either by professionals, family, work etc.

I can tell you that until i made a decision about treatment for the disease itself, that it was a struggle. And it did feel lonely. Even though i have a great support network it was really just me going through the pain not them. It was difficult to explain it to people which made me feel worse.

I was on tranexmatic acid and mefanamic acid. I came off them as they had actually stopped working for me.

I was then placed on mycrogynum 30 tricycling but found i had a retinal bleed/ clot from the medication. So i was unable to take it anymore. I was then placed on codydramol but had bad effects which made it problematic to do my job.

I tell you this to just highlight that through trying to accept the disease as part of my life i was actually causing my life to revolve round the disease.

My gp wanted to place me on the coil. I refused. I didnt want to mask the problem anymore. I wanted someone to listen. I wanted someone to realise that i was struggling and i wanted it to get better permanently not just for a period of time.

I guess what im trying to say is it had always been a struggle not just physically but emotionally. I couldnt just put up with it anymore as it was making it difficult to have a good quality of life.

It wasnt get better; the options i had gone through masked symptoms but didnt really deal with the actual problem itself, so accepting that it would always be like that become something that was unacceptable. At that stage you know you need to get something done about it.

I guess its a personal battle and that both struggling and accepting it is an individual journey; wheither the journey gets better over time depends on how the individual wants to go forward with it.

Im sorry if the above doesnt help. 😯🙁

X

[joolsharding in reply to NH88]

Hi NH88, I'm new to the forum after a recent diagnosis and struggling with the whole lot. What was your final decision? x

[NH88 in reply to joolsharding]

Hay welcome

I can tell you what my final decision was but firstly i need to highlight that it was a personalised choice and one which i had decided on for a couple of years and with a LOT of research and forethought. My decision was not one for everyone and even at my young age would not be given lightly. It also required medical history and family history to be considered.

I decided that at 27 i wanted to look into a hysterectomy. And at 28 i had a full hysterectomy with cervix and ovary removal.

I will highlight that i went private to a fantastic consultant and another optikn was suggested which would have given me the opion of at max 5 years grace if i wanted to have a family. Although finding out later that the endo had spread up my follopian tubes and onto my ovary would have possibly made this hard. Due to family history i knew i couldnt be placed on certain drugs and i knew as my sister was inly 10 years older that the rate of the endo was problematic.

She had had to have the proceedure 3 years before me and was in such a mess inside that although they took as muh of it as possible some had been absorbed into the organs and muscles and will alwaays remain (due to the fact noone listened in the 1st place) yet now she is a completmely different person. She seems so much happier and although she still has some pain it is NOTHING compared to what she did have.

My endo was millimetres from the bowel and couldnt be found with any blood test or ultra sound due to the place where it was. I was covered all in the back and up my right side.

The surgeon said if i had left it it would have gone into the bowel wojin the year.

I also had a severely tilted womb which would only have agrivated the issue and cervical smear tests were a horror story for me.

Many people on here would say that it was an extreem measure and that the thought of hrt for years ro come would be damaging. Also that a hysterectomy is not a cure for endo. I will agree with them up to a point. It has helped me. It has helped my sister and it may help certain others. It is not a decision to be made lightly and is not just a matter of wanting it or of personal choice, but if medical history and other improtant factors.

I will always say that you need to speak to a qualified surgeon and consultant that knows about this specific disease.

What is right for me isnt necessarily right for others. Do your research and never make a decision you are not comfortable with. Ask for second opinions. Ask others what they have done. Ask for options that would be best for you. And research things yourself. Never be afraid to ask questions.

If you want to chat more give me a message. Sorry the post is so long.

Head up. Good luck. Xx