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Endometriosis UK
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Worried about what options I may have great endo

I recently underwent a TURBT procedure for a cancer scare in my bladder, after biopsy found out it was endometriosis inside my bladder. Urologist has referred me to gynachologist. After lots of reading and am concerned what my options maybe to treat the end o because I have had the mirena coil fitted for the past 20 years (replaced after every 5 years) to control heavy bleeding and painful periods, I have also been taking amitriptyline for the last 15 years for migraine prevention. Went to see GP who has access to MRI results but would not discuss the results because I had not seen gynachologist but could only say there is evidence of other endo in my pelvis which is causing pain. I have 2 grown up children but have not started the menopause. Can anyone help with possible options for treatment to stop the pain?

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Hi I have stage 4 endo, they give you options during your consultation. They may recommend surgery or hormone meds to reduce pain. I had 2 ops n still have pain so I had acupuncture and that really helped me. See what options they give you when you see consultant x

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Hi Poppy,

Im sorry to hear of your health issues. Im currently at the end of the 5 years of my 3rd Mirena coil. My symptoms of Endo only started 12 months ago. I have an exploratory Laparoscopy this coming Monday 5th Nov.

Having suffered with all the classic Endo symptoms throughout the past year with pain, bowel issues, urine problems, fatigue & feeling unwell occurring in a pattern of when I Id be ovulating & menstruating.

All tests / scans initially were coming back clear until I seen my Gynae Consultant in August. He carried out a pelvic exam (which was excruciating) & referred me straight for a Lap.

I was confused when my Gynae suggested Endo as I had no bleeding which is a main symptom and also have the Mirena which is supposed to suppress and treat Endo.

My symptoms have progressed to having very few pain free days a month now with bladder spasms and blood in stools. Severe inflammation looking heavily pregnant & have a severe burning pain in my uterus. I have sharp stabbing pains in left ovary along with back and hip pain if standing or seated.

I am terrified of what Monday will bring. If endo is found Im worried the scale its at & worried the mirena has masked the initial symptoms for years with suppressing the blood loss.

Did you have the Mirena before any of your issues or are your bladder issues more recent?

When you do see a Gynae request a Lap as the Mirena or hormone treatment hasn’t stopped things getting to this stage now for both of us.

Paula x

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Thank you Paula, I have suffered with cystitis like pain for 5 days every 3 weeks or so for about 10 years, stupidly I did not go and see my GP until I was suffering from break through bleeding and clots, they referred me for an ultrasound to check for fibroids that is when the bladder disruption was found. I was told off by so many medical professionals for not getting myself checked sooner, but never considered endo. I too am very scared that the Mirena Coil has masked the symptoms of endo and it may be more widespread than I first thought. The pain I have now is like someone nipping me in my lower stomach, chronic lower back pain and a swollen stomach. I see the consultant at the end of November so fingers crossed. Best wishes and good luck for Monday, please keep in touch with how it goes.

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Hi,

Thank you - ill keep you posted 😣 im getting more nervous as the day approaches.

The cystitis pain you describe sounds cyclic. The burning pain in my uterus I likened to cystitis. The pains increased in severity as times gone on, no pain relief touches it! I think my body goes into shock after so many hours when it gets severe as I literally freeze, unable to move.

The back pain I used to think were kidney stone pains over the years as ive bn prone to those - If only we had the menstruation to put 2 & 2 together! I wouldn’t wish this disease on anybody, its taken over my life being unable to work or socialise.

As for the mirena, thats getting taken out & never to return! For years I thought it was the best thing since sliced bread lol. Not no more!

I hope things are ok for you today.

Paula

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Hi Paula your symptoms sound so much like mine, I have the mirena and now booked for laparoscopy 11th December. Hope all goes well with you.

I had asked for another mirena to be fitted during surgery but hearing both your stories I’m now questioning the idea xx

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Hi Vmagpie, Thank you!

I hope your Lap goes well also. Until this post id never seen any other Endo stories of women having the Mirena before any diagnosis, which made things even more confusing.

Its nice to know were not alone & that these things do happen. I think it may be the disadvantages of the coil for women using for contraception only, being unaware of any potential dangers of endo until its too late.

Also for me, this is clear example that the coil may ease or stop any bleeding without actually suppressing the endo at all.

Only you can decide on a further Mirena after your lap, for me, its my worse nightmare.

Paula xx

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Hi poppy, so sorry you’re experiencing all this, I’ve always had terrible periods and after trying loads of different contraceptives, I reluctantly went for the coil.

It helped massively for some time but I’m now booked for lap in December.

It’s horrible to think something we thought was helping symptoms was maybe just hiding them.

Hope you get some better treatment options xx

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I thought the coil had been wonderful but thinking back I have been to see several specialists for breakthrough bleeding, etc but due to my mum having an emergency hysterectomy at a young age due to fibroids I was told to keep the Mirena in for as long as possible, which I have, but the diagnosis of endo has completely come out of the blue, just hope the gynaecologist can offer me some options as I don’t want to have to take extra time off work for surgical procedures 😔. Like Paula said I hadn’t heard anyone else be diagnosed with endo after already having the coil fitted. I just hope I am not just brushed off.

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I hope you’re not either.

I’m not diagnosed, but think maybe I’ve had it for years. Now I’ve got a date for my first op and removal of a lump in my abdominal wall.

Taken so many hormones over the years which may have given me a break from some symptoms for shorts periods.. but that’s always been swapped for horrible side effects.

After an emergency C-section over 2 years ago I got a lump in my scar which gave me symptoms related to my cycle, I had the coil fitted about a year post baby as my periods had returned with a vengeance and it seemed to help after it settled, It pretty much stopped my periods (occasionally a tiny smear of blood) but I’d still get ovulation symptoms.

Gradually the lump grew and when I was ‘due on’ the lump would itch and burn inside. Time passed like this, I saw the drs, got brushed off. then around ovulation onwards I’d become painfully bloated, I get stabbing pain in my pelvis mainly around the lump, left hip, lower back, sciatic pains.. it started affecting my left leg. All cycle related. Saw gp I’d never seen before in May .. she suggested endo. I ended up in hospital during the time waiting for my referral. Started getting sever pain and bowel symptoms which were constant for 5-6 weeks.

I’ve had lots of these symptoms along with excruciatingly heavy long periods since 17 and now, at nearly 34 I’m only being listened to since this lump has grown to the size of a walnut. I feel, well the impression I got from the consultant/surgeon is, they don’t give a crap about my long history of debilitating menstrual torture.. they’re interested in cutting out the lump and whilst they’re at it they’ll do a lap to ‘reassure’ me that all my symptoms aren’t down to endo

Sorry, what I’m saying is.. don’t let them brush you off, I did that so many times, took the hormones, whatever form they came in, tried tried tried and failed. The coil has helped.. either helped with or masked my symptoms but it’s not fixing me..

Something is going on in my body, just like you and we know it’s not nothing.

I hope there are other options for you. I hope something helps.

All the very best xx

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Thank you, after reading some of the other stories on the forum if I aren’t offered any options I may ask for a referral to the nearest BSGE clinic to see if they can help x

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