Endometriosis Support Group

Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.

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Pain & Anger - really need advice please

Hi girls

I'm new, just joined today and hoping to get some advice/support.

As background - I was diagnosed 10 years ago and in that time I have every type of medicine, treatment and multiple surgeries possible. The last surgery unfortunately was a bit of a disaster resulting in multiple stomach perforations. This experience had an awful impact on my overall wellbeing and it took a good couple of years for me to recover from this.

Eventually, I realised I needed medical help and found a wonderful lovely Dr who really empathised with what I had been through. Because of my history, the option he felt would be best was to insert the Mirena and the hopes are that this will eventually make life easier for me.

As this was a few months ago, I'm still waiting for things to kick in and hopefully improve but today is one of those days where the pain is just too much and its led me to this support group. I suffer from Chronic Pain as a result. Many of you will understand this though, I've 'sort of' become used to it, its a way of life or the only way I know. I always made the decision to get up and get on with things. Somehow movement for me helps, when I stop, the pain is so severe.

Aside from the pain though, I get so moody and so angry and I wonder if it is a result of the chronic pain, the endo or just everything combined. I know I am not depressed but there are days that I just snap constantly and cannot help it. Its really getting on top of me and I wondered if this might sound familiar to anyone else.

If this hits home with you at all, please let me know and any advice you might have.

Thanks
MissD

Replies

deleted_user
deleted_user

hello MissDotty

welcome to the group, im am sure you will find alot of support here.
i understand what you are feeling and you are so right about this hitting home,i also had surgery last year which went very wrong ended up have 2 more, just to try and correct the damage from the endo surgery. so at times dont know weather the pain is from all the Operations or the endo, but like you said just need to get up and keep living.
i too get very moods and mostly my husband get burnt by my moods, but he is understanding, im greatful for that.

i dont have much advise to give regarding pain as i have not found anything that really helps with the pain, but im hear if you need to chat or vent.
but have been trying to do some sport the last 2 weeks nothing hectic, just tennis, but i think it helps with the stress of eveyrthing that is going on so i have not been too moody,

stay strong
God bless
sexyfairy
deleted_user
deleted_user

Thanks so much for the reply. So good to hear from someone else that is going through the same thing.

Sorry to hear your surgery caused more problems. Its really difficult when that happens. My hubby too gets the brunt of my moods but he is thankfully a very calm, patient and understanding sweetheart ! I have a little boy though and I don't want my moods rubbing off on him, that would just break my heart so I really try my best to keep it under wraps.

As for painkillers, when the pain is at its worst, like today, they don't help. I do find though that a hotwater bottle is my best friend but it might just be a comfort thing more than anything else. I do think exercise and nutrition is key but its finding the energy and avoiding the huge cravings to do it.

Thanks again for the reply and I'm really looking forward to giving support here too :)

Be well
MissD
deleted_user
deleted_user

thanks, i am over all the drama of the bad operations, and healing well i guess, having a good understanding partner makes the situation so much better and easier to deal with.
yes having kids around with these moods are not nice, but you are lucky you have him around too, i bet he keeps you busy and you mind off endo at times,
We dont have children yet, but we hoping God will bless us when He feels we are ready.
i have also been using a hot water bottle it does help at times
well im just trying the exercise out, have not being moving much around after my operations had too much to recover from, but im hoping this will help,
deleted_user
deleted_user

Well I hope things work out for you in terms of little ones. Keep the faith! We are very lucky and blessed with our little boy who we adopted. This was the road we were led down and if having Endo led me to him, then it was worth it.
deleted_user
deleted_user

thanks, oh ok thats so lovely, we have been trying to start the process of adoption, but im from South Africa, so the process is hard and long. we have not even fillied out paper work as yet as all applications are closed for the next 18months, but staying postive, and having great support from my family and true friends,

we also saving for IVF, yes i agree 100% with you on the worth it apart.
i get so much mixed feelings from other people about me being so open to adoption, but i always say God must have givin me this wisdom to open my heart to sombody else child for a reason,
deleted_user
deleted_user

I'm sure almost 99% of us in this support group can identify with you unfortunately but at least we have each other! I have currently been on here venting non stop it feels like about how I feel like screaming "WHAT HAPPENED TO MY LIFE?!?!" I used to be happy, go out with my family, be active with my 3 year old, be able to study and get good grades, go see friends, etc.. just normal life... but now to even go to the grocery store or TAKE A SHOWER is getting to be too much...

the pain makes it hard to do daily activities but then if you stay in bed you get lonely/blue/"depressed"/angry at yourself that somehow you caused this (these are all things I feel..not assuming you feel these) and then the pain gets worse because you're depressed/stressed, it's just a vicious vicious cycle especially with endo because most often stress causes major flare ups.

I feel like I am no longer the person I used to be or that I will ever be able to do be that person again, I feel like a complete shell of a person.. however I do have one complete blessing in my life, my daughter. No matter how much this disease is killing my spirit I have to try to remind myself that not everyone is so lucky to be able to conceive as I was able to. I want another child but with my endo and the two times I've had PID due to IUD useage to help the endo I'm worried my fertility is shot. But I do have my little princess
deleted_user
deleted_user

hmm it cut off my end...

I wished you well in trying to find relief for your physical and mental anguish because of this disease.. I know it isn't easy getting others to listen to you but here on this website you will have many people who can relate! take care!
deleted_user
deleted_user

Thanks ittybitty. I hear you and totally get everything you said. I guess we just trudge through our painful days and jump for joy on the good days. Being thankful that I can keep moving for the most part and just trying to get on with things. Also being thankful for our little ones.

Thanks again :)
deleted_user
deleted_user

I totally can relate to all of u ladies..I'm not even officially diagnosed yet with endo but my doc feels that is the only other explanation to the pain I feel daily..I am on a cocktail of narcotics just to function daily and then I just got breakthrough bleeding Monday morning at work which ruined my whole day..no pain medicine will wok when I bleed..my pain doctor changed my meds. Yesterday and they aren't helping to get me through the pain.I had to call off work today because the more I move the more I hurt..I am too blessed with a great husband but I still have putty parties and blame myself for what is going on..I get a diagnostic scope in October and I am just praying for an answer..I may have to get a hysterectomy..when u ladies refer to the surgeries u have had,what were they for?..to remove lesions of the endo?..and what made them go wrong?
deleted_user
deleted_user

Hopefully you will get a diagnosis next month and then they can begin to treat you and your symptoms. Do you feel like you have had this for a while?

In terms of surgery, I have had 4 laparoscopies, the first being investigative, then 2 were to laser the endo away. The 4th was also meant to be laser treatment but I ended up with multiple stomach perforations and so I ended up having a labarotomy instead. I don't want this to scare you because I just think I was unlucky. The fact that my Surgeon fell critically ill the next day would make you think that perhaps he really wasn't well when carrying out the surgery.

My new Dr would have carried out a hysterec tomy had my history been different but I am now considered high risk due to my internal scarring. The most recent operation I have had was a hysteroscopy and they inserted a mirena at the same time.

Stay focused on the scope next month and treatment following that and fingers crossed you will get some answers/help then.

Be well
deleted_user
deleted_user

Like the other ladies have said we can all relate to how you are feeling and I have to say joining this group has been at many points a real godsend...talking to other people who are experiencing what you are or who have done is invaluable.

I too had the mirena coil inserted during my last surgery and I have experienced the same (mood swings, uncontrollable snapping, feeling down and not myself as well as other things).
I also seem to be getting these horrible spots which are making me feel pretty hideous and self conscious. I spoke to my consultant at hospital about it and he told me I needed to wait another three months to see if things improve (your body can take a while to adjust to the hormones)...how long have you had it? I'm now in month four and hoping it will get better.I feel like I'm stick between a rock and a hard place though...the mirena is the best chance I have of controlling the endo (according to doc) but it makes me feel like a different person, gives me spots and my libido is non existent?? Soooo frustrating

It is also very difficult to know if all this is caused by coil or the endo or painkillers...

Sorry venting too now! I just want you to know you are not alone..

Btw have you tried a TEN's machine or homeopathy for the pain?

Happy to tell you bout these (tried both) if you're interested..
Good luck x
Rosetaz
Rosetaz

It wasn't until I was 49 that I had my ovaries removed then my endometriosis calmed down. It had formed several tumors, the largest invading my bladder and vagina. It had blocked the ureter to my left kidney so that kidney was destroyed. During the surgery to remove my ovaries, the tumor, my kidney and repair my bladder and vagina was the last time I had endo pain.

Prior I had two surgeries to remove endometrial tissue in my abdomen. One surgery to remove my uterus which had huge bleeding fibroids. I was 34 and couldn't talk the surgeon into removing my ovaries, had he listened to me, I would have never had such extensive endometriosis and would have never lost my kidney or had damage to my vagina or bladder.

That's how it was for me. I'm 56 now.
deleted_user
deleted_user

Helen - that sounds all so similar so maybe it is our bodies getting used to the coil? I'm 3.5 months in with mine, initially I was told about 3 months for things to kick in but typically my system is uber sensitive to anything like that so now its seems it might take another 6 months. Where are you getting the spots? I do get bad ones on my upper back which I never had before. Have you had any weight gain with it? I don't have any other options really so I'm hoping this works. This will be my second one as the first slipped out :(

Haven't tried the TENS but have done homepathy and also acupuncture. Interested to hear about the TENS though.

We'll get through it I'm sure. I bet in a couple of months our coils will have sorted us out once and for all!!

Rose - good grief, that sounds like you had a nightmare but thankfully they got you sorted in the end. I do wish though that Dr's would listen to women about this stuff and if they need something removed, they have a valid reason in asking for it. Do you suffer at all with it now?