Feeling ashamed... Positive stories please!!!!

[Kittykat8989]

Whilst writing the title a part of me felt wrong doing it. But I need to vent how I feel...

I was diagnosed with severe bowel endometriosis a little over a month ago. It has changed my life as it has inhibited me both mentally and physically.

I feel ashamed and embarrassed at my diagnosis. Talking about bowel movements, habits, rectal nodules, POD’S etc....

The amount of people I’ve had examining my reproductive organs (I have lost count)!!!!!

I know it’s very early days for me, but I’m looking for people who have “seen the light” almost and come to terms with their diagnosis.

Although I’m feeling down at the moment, I’m seeking positivity which I guess can only be perceived as a good thing! X

[Hidden]

I felt exactly as you did initially, I found it very embarrassing and difficult to discuss when I was first diagnosed.

But now three years later I find the embarrassment factor a lot easier to deal with and I can talk more openly about things, cope with the examinations better etc. In my experience it does get easier xxx

[Kittykat8989 in reply to Hidden]

Thanks Janine,

I just feel I’ve lost who I am as a person. I had a miscarriage in January which was traumatising enough. Then to get this diagnosis and now awaiting a big op with a specialist it’s like whaaaaat is happening? I wake up most days and can’t believe my life is the way it is.

Everyone is saying take it each step at a time, but I want a baby so I can’t help thinking into the future. I can’t imagine my life without children and the thought of

more miscarriages fills me with dread!

Gosh I sound so negative 😳 x

[Ally86 in reply to Kittykat8989]

Aw sweetie things do get better. And you will find your own way of dealing with it. I am in a similar situation. I got diagnosed in 2012, since then I have had 6 operations. My last one they found endo on my bowel and had to cut some of my bowel away. Iv had 5 miscarriages in 6 years of TTC and we are still TTC our first baby, however during my last op they found a Septum in my uterus and it turns out all my miscarriages were due to this Septum. All my baby's were attaching to it as it was in the middle of my uterus but it did not have a blood supply which caused my miscarriages. I had Septum removed in December and are now TTC again. I know it will happen for us eventually but I do feel your pain. The best advice I can give is to keep talking to people about it. This forum is perfect because all of us ladies on here know EXACTLY what its like and speaking to people that understand That, for me was reassuring that I wasn't on my own.

Keep your chin up sweetie 😚 xx

[Kittykat8989 in reply to Ally86]

I hear stories like yours and I think what’s wrong with me?

I’ve had one miscarriage and I already feel like giving up- how do you do it?!

I was never expecting to be diagnosed with endometriosis let alone SEVERE endometriosis. It’s just so overwhelming x

[Ally86 in reply to Kittykat8989]

Don't be daft hun. We all deal with things differently. Im not ashamed to say I take the cowards approach when it comes to my miscarriages. I don't think iv ever dealt with it, as it was out of my control. But the one thing i do have control of is my determination that this horrible disease is not going to stop me getting my baby. I feel If I give up then the disease has won, along with already taking my rainbow babies.

We all have our reasons for wanting to give up, but we all have the same reason for carrying on. Running is my escape. It really helps me get my head straight and helps with the evil hormone and of course weight maintenance. Xxx

Oh, Sage essential Oil is amazing for hormone And pain. I put a few drops on a heated bean bag for my tummy or in a oil burner. No idea how it works but it does.☺ Xxx

[Ally86 in reply to Kittykat8989]

I too felt I lost my identity in the beginning but you do find yourself again. The more the learn about the disease, the more you talk about it, the more you learn how to deal with it. Things start becoming clearer. Knowledge is power and drive 😘 xx

[Hawko1989]

Thanks for reaching out, it is the first step towards accepting this cruel health condition. You should never ever feel ashamed, I feel sorry you feel like this and wish you some kindness on yourself. On here you will read lots and lots of different stories, every person has a very different experience of endo. I am overwhelmed by how brave people are , they have been through loads and still have faith that things will get better. Never be afraid of posting online, that is exactly what the group is for

[Kittykat8989 in reply to Hawko1989]

Thank you, I just feel bad saying I feel ashamed. I’m going through lots of emotions. I’ve lost my identity and feel I’ve given it to endometriosis, like I’m letting it win and rule my life and I hate that!

I know it’s very early days.... but when you’re TTC each day is precious.

I’m on Zoladex for a few months so won’t be able to TTC again for a good while. It’s so sad x

[Hawko1989 in reply to Kittykat8989]

It is sad and it’s taken/ taking me a while to come to terms that babies won’t come without some help from the hospital. I’m 29 been trying for 3 years naturally. Got the diagnosis and hoping that this surgery will sort me out. To be honest although it was hard at first, now husband and I are very strong as a result of this . There are always some positives out of the worst situations!

[PandoraPenguin]

I think there is this perception that anything to do with periods/poo/childbirth is taboo. However, when you actually talk about these things it is remarkable how many women open up. I have seen some really interesting articles through Twitter this week after Chrissy Teigen posted about how she has had post natal depression and a nasty tear with her first birth. This open the floodgates of women sharing.

When I was bad last time around I had a lot of colorectal visits and a barium enema which I was embarrassed about. However when I made a point of laughing at how the Dr doing it was unprepared and inexperienced and wouldn't listen to the nurse and got a barium shower more people I know laughed and shared stories of their colonoscopies and other "embarrassing" procedures. Once one person shares it "normalises" it.

I have been honest this time around that I have endo and it affects my bowels and I have adhesions and I now know at least two other staff I work with have bowel or adhesion issues.

Remember - everyone poops, just not everyone cries with pain when they do it!

[Kittykat8989]

I think as women we feel it’s our right to be able to have children without all these obstacles in the way. When I say I feel ashamed it’s because I can’t give my Husband the family he deserves, or the life we envisaged together.

I also think as a young woman I shouldn’t hurt, or be facing big surgeries. I mean all I have to look forward to in the imminent future is an appointment with a specialist I’ve been waiting a month to get- that’s sad!

I am someone who seeks positivity and I will continue to do so, I don’t feel at the point yet where I can say “I will not let this beat me”as at the moment I am. I’m letting the endometriosis win and analysing every little niggle, pain, ache. It’s location, it’s severity, it’s length... it’s a sad existence I have at the moment. But I purerly think it’s down to fear, someone said to me “you are letting fear rule your life” and they’re right- I am! X

[Kittykat8989]

When I’m feeling like this, I often think of one of my favourite songs, Queen- “I want it all” and that’s the problem....I do want want it all... don’t most people?

I know I’m being hard on myself and I should focus on the here and now, like my consultation on Monday. It’s with one if the best specialists in the UK so I know I should be grateful for that but is it not sad I’m looking forward to it?

I’m wondering if this Zoladex is effecting my mood as I feel so low. Could be hay fever as well lol. F*** knows! X

[Lottie80]

I totally understand the embarrassing feelings. Have an internal scan and examination on the heaviest day of my period. Blood everywhere. Not shred of dignity left.

As to talking about bowel movements I think im lucky coming from a nursing family. We think nothing if mentioning poo/bums/discharge/diarrhoea/ so Im immune. If it helps in any way, it probably doesnt, but the gynaecologist talks of such things all day and literally will NOT even think that other people are embaressed by it.

Please stay away from feeling shame. This is not your fault and doesn't reflect you in any way...this is an unfortunate condition you have along with us all here xxx

[Kittykat8989 in reply to Lottie80]

Thanks lovely, I’m getting there. Everything has happened VERY quickly for me and my emotions and feelings cannot keep up. Within the space of 3 months I would have had 2 surgeries, come to terms with new diagnosis of severe endometriosis and started Zoladex.

For many people reading that they may think well you’re lucky to be treated that quick and I do acknowledge that. HOWEVER it’s my body going through this and it’s tough. I’ve also had to try and live as normal life as possible by going to work, doing the shopping, being a wife, friend, daughter...etc...

I’m very hard on myself, I’m enquiring into getting some counselling as I can’t contiue with this punishing mindset that my life is a write off xx

[Lottie80]

You will be just fine I can tell. It has been a huge shock in all regards but things will work out ok and life will resume as normal (with painkillers and a coil in hand.

I think it's healthy and normal to feel as you do. I did for a time. I hate thinking Im not "perfect" with regards to my health. From personal experience though and from that of close friends, there are other conditions I want even less to have. That's hardly solace for now but I think you're doing all the right things for getting on and living with this, rather than letting this become your life. There are so many people out there with so many conditions that nobody knows about. You are joining a big club.

Hoping that you feel better soon in all respects. There is always an ear here x

[Kittykat8989]

Thank you, that’s so kind of you. I’m trying to take positive steps forward. The word “endometriosis” has been one I’ve feared for years and to be told I have a severe form of it was a huge punch in the face.

I appreciate it’s a horrible disease but the Internet is full of such horror stories and I think that’s made me worse for sure. Thinking I’ve got this life long illness and all I will be is miserable, I think that’s why I was willing to give up the fight so quickly . But now I have a diagnosis and get the right treatment and support to control it rather than letting it control me.

I’m such an irrational thinker aswell which doesn’t help xx