My Story

[Irelandwoman]

I found out that I had endometriosis when I was about 32 by the way of a Laparoscopy which I had done because I had gone to see a Gynaecologist. I was told it was at a low grade. It got worse as time went on. I had to take lots of painkillers and just solider on. I have had had three session of Decapeptyl injections at different times. These helped in that it was great to have no periods. The only thing was I put on so much weight and it was not good because I also had two big back operations which was difficult, but that is neither here nor there .I got very depressed with it. I work part time because of my back operations and sometimes I could not always attend work because of pain and discomfort. The pain I had was on my right side around to hip and my back when I walked it felt like something was hanging out of me. I had pain in my rectum. I felt bad before my period, during my period and after my period! I was having one good week on four. My sense of humour went out the window and I am usually upbeat. I have no children and I am a virgin. I found that using a vibrator was very painful so I stopped using it. {I sorry if I offend in my mentioning this} I begged my Gynaecologist to please help. I felt she needed to look more closely with a Laparoscopy but she talked about taking pill back to back for three months at a time. This helped but I felt it was only a temporary solution. My GP send me to a bladder consultant specialist who looked at my bladder under anaesthetic. He said that my bladder was badly inflamed and put me on pain patches for six weeks. He said it was time I got a second opinion he was right. So a month ago I went to new consultant. He did a Laparoscopy and found that I had two large fibroids and another starting the size of pears! He also put in the Mirena coil, which may help me in the long run. He said I may need to have womb removed yet and he would see me for a review in September. I felt while he was nice and very helpful listened to me he was a bit flippant about removing my womb. I have discomfort at the moment and finding it difficult to go to the loo and I dread my next period!

I would like to know if the actual string should come down like if it was a tampon I don’t think mine does?

I am 47 years old and really at the end of my tether!

[Impatient]

The mirena string starts off very long, when it is inserted, it will hang outside the body, but is usually cut short by the person who put it in. Now hopefully you can still feel the strings inside you.

If you cannot, then one of two things might have happened, either the mirena fell out, which is always a risk in the early weeks, or the cervix muscles have sucked up the strings in to the uterus. Not a problem till it comes to having the mirena removed, as they need to do that at a hospital with an extended pair of tongs to try and grab hold of the strings inside you (could be rather ouchy).

If you can still feel them but they are definitely inside the vagina within finger distance from the opening that is ideal.

Any longer and there is a bigger risk the strings will get caught when you wipe down below and pull it out or external infections can migrate up the chord, so inside but still feelable is the best length.

Being a virgin, has nothing to do with endo or the degree of pain down below in the vagina.

That pain is caused by tiny but tough strands of scar tissue in the vaginal wall (caused by endo also could be caused by sex or any number of reasons that cause injury) and around the outside of the vagina hardening round it like a glue corset.

So when you try and stretch the vagina for an examination, or smear test, or having sex or using a vibrator ....whoa it will hurt like hell. Because you are tearing something which should be stretchy but is being held fast by these scar tissue strands. Like when you pull off a strong plaster and it takes the skin with it because the glue(adhesion) is too strong.

A vibrator will not help endo. Sorry that's the bad news as far as enjoyment is concerned.

You have to think of endo as hundreds of little wounds, which bleed every month. Doing vigourous activities (even sports) can aggravate those little wounds and their fragile clotted covers each month, and cause them to bleed even when they are not meant to be bleeding with your menstrual cycle. I'm not saying give it up completely, but knowing it will cause pain afterwards is something to bear in mind and so cutting down on such activity while not great for the pleasure receptors in the brain is going to help the endo from hurting. It might be best left to the first few days of a period when you'll be bleeding anyway and the vibrations might ease the cramping, but best avoided at other times unless you hve a few days off to recover.

Having a hysterctomy doesn't rid you of endo, it will only help in the fibroid department. But will also mean you cannot have a mirena.

It took me about 5 months for the mirena to kick in, but when it did wow, it was life transforming. I'm mid 40's too, and I never imagined just how much my life was being ruled by erratic heavy painful periods. Just having that stopped was truly remarkable and makes coping with everything else so much easier.

It doesn't suit everyone, but is definitely worth getting through the first few months to see how much good it can do for you.

During those first few periods, with each period the mirena is building up layers of goop which it uses to stay in place first and foremost, and secondly to stop the lining of the uterus from shedding as a period each month. which is why it takes a variable length of time to build up this goopy coating, and why when it is fully working you can still get occasional 'spotting' when some small patches of uterine lining can occasionally bleed. But it is nothing to what regular period is like. I only noticed my 'spotting' when I wiped down there, it never got to the point of making any marks on pants for example.

The other thing to be aware of, is that as and when it does kick in, the manufacturer does say it should last up to 5 years. Well that 'up to' bit can be anywhere from 18 months to 5 years or more. So it can run out earlier than expected, but if you thought it was doing a great job then obviously you can get the finished out one swapped for a fresh new one.

Hope that answers some of your queries.

Anyway we are here most days if you want answers to any questions.

...and I haven't had kids either. Not all of us have been lucky with mother nature in that department, and absolutely loads of us find sex/smears etc horrifically painful down below. It is very common with endo.

[Irelandwoman in reply to Impatient]

Thank you so much for your reply Impatient, you have been so helpful. Its been a lonely journey so glad I found this website. I thought removing womb would help with the endo. Is it usual to have fibroids if you had been previously told you had endo?

Thank you for your kind reply re vibrator we all have needs I guess. My mum bless her never had problems with periods. Friends just don't understand and tell me to swallow lots of painkiller! It can be very lonely at times. You have shown more kindness taking time to answer this in a way I can understand. Thank you x

[crystalgirl in reply to Impatient]

I think you are amazing and wishyou were around when I was seventeen.Because of my upbringing in a boarding school run by nuns,they used to tell us that our period was all our badness coming out,so you can imagine the guilt and scared of telling anyone what was happening.When I started work,it was like a nightmare,I would be constantly having heavy periods,one day at work,I had a really bad flood,ran to the loo and then heard colleagues call me a dirty cow,surely she should know what to do when she has a period,I took off my skirt and put my coat and walked never looking back,these were the days when you went to the chemist,and towels and tampons were not on display.But after that,I went to my GP who was not english,and he recommended that I should have a baby every year.It is very lonely as you really couldnt share what was happening with anyone,one morning I got up and said enough is enough,I have a life its about time I lived it,so really tried,then I collapsed and was rushed to hospital,I was very lucky and met Mr Winston before he was on the television,he helped me to understand in layman terms what actually was happening,now that I knew it was a bit easier to deal with and you just learn to cope with endo,and not just give up.Now I am trying to deal with something else MS the pain and fatigue,the question always is how,my answer is take each day as it comes,never expect anything,if you get a good day its a bonus,make the most of it,dont ever look back and say "whoa is me" there is always someone out there worse of then you are.I have never been lucky in having real friends,because of the nature of the beast or children,but each day I try to look for something to smile at,it is difficult,but people in general prefer other people to be upbeat,if you show that you are miserable,you end up having a very lonely life.as people are not that tolerant.CrystalGirl

[Irelandwoman in reply to crystalgirl]

Thank you Cystalgirl for your reply. I am always upbeat when with people but when feeling real bad due to health I do so privately. Yes people are not tolerant and generally if it happens to them act surprised but hey you have been saying it all along but nope they did not listen! x

[crystalgirl]

Hi I think there are some people out there who would like us to believe,that they are problem free,but all women suffer in some way,maybe not as much as us,but still they cannot comprehend,so they become intolerant of others suffering,because they think we are making a mountain out of a mole hill.But instead of being sympathetic,they go the other way,because they feel that they have had a worst experience.Crystalgirl