Been having ridiculous periods, pain on right side prior to period and ovulation and also pain when having sex during these times too. Had normal ultrasound showing nothing, GP tried to convince me laporscopy a bad idea and lots of risks and to just have the merina coil (currently have copper coil as when on hormone pill i felt like it really effected my sex drive, weight and mood so really keen to not be pumped with hormones). Been to see consultant today and again they was really pushing the merina rather than getting a diagnosis. They even said where have you seen all these side effects! I was like urm the leaflet you give out! They was like well they are not common they just have to tell u just in case and the hormones are only local within uterus.
I explained to them I was not willing to take hormones that effect me daily without a definite diagnosis. They agreed to do the laporscopy and a hysteroscopy.
Advise from anyone who has had these procedures?
They have to remove and replace my copper coil, anyone had an issue with this?
Anyone been happy with merina? Without nasty side effects?
What other treatments have you ladies tried and tested? Is the merina the only option?
Thanks ladies
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Curlyhrs
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They push the mirena because in most women with endo it frees them from periods and period pains which make life so much easier. The endo bonus is that if you have clear tubes and have periods the backflow of blood along the fallopian tubes can spread endo, so if you stop the periods then that is not likely to happen and if they have already cleaned you up inside it cam make all the difference between coping with the endo as it is now, versus a monthly invasion of more wandering endo cells that can start nesting anywhere and compromising your fertility.
The mirena is something best put in place during a general anaesthetic, my advice would be to have that done at the same time as the exploratory op looking for endo.
Whether they find endo or not, having a mirena in place andworking to stop the spread of endo is worth a try, or at least worth having to stop periods, having to take pain killers for periods, time off work, cost of towels and tampons and loss of social life while you are miserable. It also does away with PMS and PMT. It has 1/7th the dose of BC Pill hormones, much much less, and it is delivered straight where it is needed in the uterus rather than going in through the mouth and floating all over the body first.
Without an ounce of hesitation it is the very best thing I have tried to relieve my monthly hell.
And i have tried all sorts of BC Pills, GnRH therapy, tranexamic acid, norethisterone etc.
Mirena will not suit everyone, but it certainly is worth trying and giving it a fair chance to get settled and working. about 5 months is how long it takes to build up layers of goop that stick to it and hold it in place and stop the womb lining shedding each month.
Having had my libido at zero with zoladex, and it came back after I stopped that, the mirena has not made it better or worse. I have lost weighht..because I can now be a lot more active than I ever could be before, having periods for 2 weeks in every month.
Even with or without an endo diagnosis- the mirena is definitely worth trying. 3 of my cousins all had it after they had completed their families (none have endo) and all swore by it, so I asked for it too, and my surgeon agreed to try and insert one in my very deformed uterus. He managed it though warned it was likely to fall out, but it didn't and it really has transformed my day to day living in so many ways. I never could plan anything for years, never knew when I would be on, how long for, how much pain and bleeding and so on.
Now no probs at all, no pills to remember to take. I just don't have periods to worry me at all in any way. So in my case it was absolutely a brilliant gadget to have. I really wish it had been around when i was a teenager, or in my 20s, and that I had used it from day 1, I could have had a very different life and not nearly so much damage from endo as I ended up with either.
My recommendation is have it put in at that op, whether they find the endo or not. The worst part is having it inserted without anaesthetic, so grab the oportunity while you can, of gettig it done while you are out cold. It could give you up to 5 years with no periods which would be utterly liberating. If for whatever reason it doesn't suit you then you can have it pulled out by the strings at the GP surgery, or gynae clinic. Definitely worth giving it a chance though.
It can have huge benefits if you do have bad periods and endo, and would be recommended after surgery anyway, if they find endo, so might as well get it put in the painless way.
Unfortunately for me the Mirena was a disaster. It twisted out of position inside me and was agony and I had to go to A & E to have it removed by emergency. They told me it could damage my fertility by removing it as it was embedded in my womb! I was not maternal and yelled "just get it out of me" which they did. I have had my tubes removed in previous ops and had a laparoscopy and hysteroscopy a few years ago which finally revealed I was glued up with adhesions (scar tissue) and had endo lesions and deposits widespread which had travelled into my stomach. This op was done by three tiny barely an inch incisions to put a tiny camera on a wire in to see what was going on. It proved much more extensive than they thought, my ovary was stuck to my bowel and tube stump also stuck plus around my belly button where previous laps had been performed. It required several days stay in hospital as they removed as much as was safe to do due to proximity to bowel. Relief days after the op was immense but it soon crept back and years on I am still in daily pain with bowel, bladder and right sided pinchy deep pulling pain and probably nerve pain made worse when bowel and bladder fill up or I eat or sit. Can't bear tight waistbands and take various meds and alternate pain meds as codeine based pain killers can help a bit but bung you up and you need to take stool softeners and sometimes even laxatives. My history of endo and adhesions is thought now I am in menopause to be more adhesion pain. However, during various investigations they found Diverculitis Disease (pouching of the bowel) and a med high receoteole (tilt) plus xray my hip and found the beginning of right hip osteoarthritis and I apparently have a small Hiatus Hernia. IBS was thought for many years to be a problem and to some degree it may have been but investigations and repeat surgeries have indeed found I was riddled with endo and adhesions plus other health conditions. Waking at night in pain is an every night event, pressure on bowel and bladder as it fills, maybe due to adhesions adhering to adjacent organs and pulling when they fill causing nerve pain which affects my low back, stomach, right pelvis, hip and sometimes right down to my right knee, plus body aches and stiffness and crushing fatigue. I feel like every day and especially night is a battle to get through. Unfortunately, people often think you are putting it on because they can't see the mess going on inside you and that can be very hard to cope with too.
I had an ablation which for me has worked amazingly, I had it at the beginning of September also had my Endo removed, I am now back at the gym, I'm playing squash again, I have my life back.
Hi mama1. I couldn't help but to jump in here with a question: who did your ablation/ where was ablation done? I struggle to find a good specialist. I have tried many, and spent lots of money with no success. Now I am in terrible debts and still with pain can you pm me please? Thanks . E xx
Hi, Basically in a nut shell even if you have a mirena for a year its cheaper than 1 years supply of bc pills. Also findings show you can have equivalent of some one taking two progesterone tablets aday if you have a slow metabolism. I also believe because of this the FDA in America has banned it being called low hormone. This is an intresting read cbgnetwork.org/3538.html hope this helps. X
I wouldn't recommend the mirena after all that I went through. Side effects where so bad that they had to take me to theatre and put me under general to take it out. Down below was swollen and full of blisters for nearly 6 weeks after they took it out. Total nightmare. However, this is just my experience, many have had it and had no side effects.
Hi there, I am new to this site. I have had Endo in excess of 20 years. I have had many laps or hysteroscopies over the years and other treatments (injections to bring on an early menopause), the list is endless. I too am riddled with Endo and in 2009 they were unable to do anything due to scar tissue restricting access and also it was around my bowel and other organs so too risky. At this point under anaesthetic, they inserted the Mirena Coil. It took several months for it to settle down & I did struggle. After that I hardly had any pain and my periods more or less disappeared. However, things started to worsen 12 months ago and I have had to go back to the GP. I am bleeding 3 out of 4 weeks, pain is horrendous and back to before. I didn't have to have the coil contraception wise and many years ago was offered a hysterectomy in my 30's (which they later decided to withdraw!).
I am currently awaiting external and internal scans as because I have moved areas they will not refer direct to Consultant and I have to sit with the GP for the timebeing. I intend to have the Mirena Coil removed asap as it is no use to me I feel. However, I do feel things have worsened for me and hope I do get referred back to the Hospital for further investigation, as I also have problems with bladder, bowel and believe my fibroids have grown.
I think there have been some good pros and cons on here for the decision whether you have the Mirena. I did have a good couple of years on it. I think you maybe need to discuss with the Consultant a bit further what other options are available to you. Good Luck.
I had the Mirena last year and I know people who've had really a positive experience from it, but I personally had an awful time with it. I had it put in at the GP's clinic while I was still awake and it was enormously painful going in. As soon as it was in I could 'feel' it there the whole time. Then it got infected and I had the worst pain with it I've ever felt in my whole life (and I've gone through childbirth) so had to have it taken out with an emergency appointment. It took so long to find it because my cervix had swollen so much the doctor could no longer find the strings and whenever she touched my cervix it would bleed profusely. A horrible experience and one I wouldn't ever repeat. Putting things in perspective though, what you do tend to find is that most people will write about something when they've had a bad experience, not so many do when they've had a positive experience. I hope you find a treatment which works for you xx
I also had the ablation on the 8th October. Now back a the gym, starting running again and feeling great. The Mirena Coil made my periods heavy, lots of pain and feeling generally rubbish. I am just hoping this continues !
Hi there, I had mirena fitted 4months ago in a final attempt to take away my periods as they were lasting longer than ever which is not good for women with endo. I really did this as a last resort, I'm 43 with no children.
The side effects are minimal so far and i , like you, was reluctant to take any hormones that would make me feel crap in other ways. I have however been bleeding or spotting for most of the 4 months since it was fitted but I take comfort in other posts where some women advise its takes 5 months to settle down. Fingers crossed it will help me in the new year!
I've also tried the endo diet which really does help its just takes a massive change in your lifestyle but results are good if you can stick with it.
Good luck, mirena is a definate option, worth some thought.
I was in similar situation - I used to have the progesterone implant, then Cerazette but they made me so ill (all the symptoms you described plus awful bloating and sickness when I ate food) so I moved on to the copper coil which was brilliant for me. Having no additional hormones in my system boosted my energy and I felt amazing. The only downside was that it gave me periods every two weeks. After 18 months of the copper coil and starting having periods again, I was diagnosed with endo and told I needed a Mirena. I really didn't want it but the dr told me it was localised and that there are few side effects. I lasted 5 months with it in - in which time I put on almost a stone in weight, bloated constantly, exhausted and generally down. I made them remove it 2 weeks ago as I was so miserable and I'm going to try pain management instead for the endo.
I am onto my second mirena coil. Personally I've found this to be the best control for me as I'm not allowed to take the contraceptive pill due to they type of migraines I have. It was a bit uncomfortable being put in and taken out but it's only once every 5 years! I do suffer a bit with normal headaches but I've always been a 'headachy' person anyway. The worst side effect for me is weight gain. Since having the coil I've gone up 2 stone....I'm not sure if this is solely because of the coil or because I'm on medication for depression as well? I hope this helps a bit x
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can you pm me please? Thanks . E xx
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