Help needed ASAP urgent!! Don't know what... - Endometriosis UK

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Help needed ASAP urgent!! Don't know what to do!!

coco2000 profile image
12 Replies

Help please!! Has anyone else been put on microgynon for 9 weeks straight?? I have severe pelvic pain, normally my right side is worse but whole area is extremely sore! It is worse at ovulation and before and during my period! Sometimes i can't stand straight due to pain! I also get extremely bad lower back pain and an uncomfortable feeling when I urinate!! I have had countless ultrasounds but they have been clear. Urologist and radiologist said it could be endometriosis but my gynaecologist has yet to mention it? She has put me on the pill (microgynon) for 9 weeks with no break however i am nearly finished the first packet and I am still in agony i think it is getting worse!! Has anyone got any advice or similar experiences? I have read that endometriosis can be excluded sometimes and not initial thought??

Thanks

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coco2000
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12 Replies

I've been on a progesterone only pill with no breaks since July, my pain didn't get better till after about 4 months when I started taking 1 1/2 pills. It's gonna take a while for your body to adjust before it works.

My first month on my pill was horrid, I got hives, then I started bloating, then I got a kidney infection, then BV which led to PID.

My pain was also worse before I started physiotherapy on this pill which has helped a lot with pelvic pain but not so much abdo and back.

Does it contains estrogen? It might take some getting used to if it is since o-estogren specifically can 'feed' endo.

coco2000 profile image
coco2000 in reply to

Hi, the pill i'm taking consists of ethinylestradiol and levonorgestrel which are the synthetic versions of oestrogen and progesterone. Therefore I am taking a pill with oestrogen so wondering is this going to effect it helping my symptoms? I have been getting treatment with an oestopath however hasn't made any difference.

Many Thanks

in reply tococo2000

How long have you been seeing an oestopath and do they specialize in the pelvic floor?

My first physio therapist didn't and irritated nerves while she was working with muscles which therefore caused pain. Not to mention if their losseinung things up (in my case my Fallopian tube) your going to feel that moving out of position which will be painful because it's essentially pulling a muscle.

Even so physiotherapy won't help till you've been going for at least 2 months in most cases.

I would switch to a progesterone one, sometimes it depends on the person.

coco2000 profile image
coco2000 in reply to

Yes she does, she's a family member also so i can see her whenever. She's been treating me from the very start after i got out of hospital.

The pain has definitely got worse since i started taking the pill, but i'm willing to try and see if it will do anything for another couple weeks, i just don't have a lot of time to play with as i have important exams at the start of may and can't be unfit for those. The urologist and radiologist i had seen suggested endometriosis but my gynaecologist has yet to mention it, do i mention it next time or not? I just need sorted asap as i said i need to be fit for my exams in may.

in reply tococo2000

Yes you need to tell them yourself, if the gyno doesn't think it is they won't bring it up, tell her you want a laproscopy. You may have to wait 3 months, I'm in my last year of high school and due to pain I haven't been attending and was kicked out and even then my gyno would rather put me on lupron then give me surgery.

coco2000 profile image
coco2000 in reply to

What would i say to her? Thanks so much for your help.

in reply tococo2000

Say that your in pain and you want surgery, that you don't want to wait. But even then I can't guarantee she'll listen.

Mine took an entire 10 min of convincing.

Music1 profile image
Music1

Hi, this is only my personal experience of taking microgynon.

I was diagnosed with stage 4 Endo around 2 years ago, and had surgery, as it had done a lot of internal damage. I was recently advised to take microgynon in preparation for IVF (our 4th time). I was not advised how to take it, and it's the first time I have taken a pill. I took it every day for around 7 weeks with no real pain and no periods obviously. It wasn't until the clinic contacted me and asked where I was with the pack. They then added ... assume you're taking a 7 day break after every 3 weeks. I had to tell them I had not taken a break at all. I was advised to finish the packet where I was and then take a break. That must have taken me upto around 9 weeks I guess with no break at all. I experienced a lot of ovary/ pelvic and lower back pain after I came off the pill and had a 3 day period after. I did panic like crazy when I heard of the 3 weeks then stop for 7 days thing, but I know of friends who have taken it for months. I used to get quite severe pain around a week before my period and then for a few days when I started. Whilst taking microgynon I have had 'mood swings, and headaches, and slight (but no real pain). Surely if you've had no 'breaks' you wouldn't have a period? I really hope you get 'an answer' as to what is happening and why. That's often the most difficult part. Best wishes and I really hope you are pain free soon x

coco2000 profile image
coco2000 in reply toMusic1

Hi, thanks for sharing this. Since i started microgynon i've had really bad headaches, skin and also sore boobs. I haven't had any periods as have no break however the pain is no better at all, I actually feel it worse since starting it. I really don't know what do to, whether to leave it another while and see if it gets any better. It also concerns me that my gynaecologist has not mentioned endo and wondering should i do this.

Music1 profile image
Music1 in reply tococo2000

I do take Tramadol for when the pain gets too much (i.e. when ibruprofen doesn't make any difference). My new GP doesn't give me any though as she doesn't believe in Endometriosis and thinks my symptoms and pain are in my head etc probably. You think you'd get more understanding from a female GP but she's younger and possibly has no experience of pain. She just said "Tramadol" is addictive. I haven't had anywhere near the pain I had whilst I was having regular monthly periods, but my mood swings, really bad headaches and ... real bitchiness and snapping at people has been difficult to keep under control. I never had any of this when I wasn't on the pill and maybe I shouldn't blame it, but I don't personally really feel myself on it. My Gynaecologist didn't mention Endo either dispite loads of meetings and ultrasound scans etc. She didn't care and didn't want to know. I had to end up going private and then getting an MRI and laparascopic surgery before they diagnosed me and told me how bad it had got. I waited for years on the NHS with severe pain, frequent visits to A&E and nothing. I do hope you get some answers. I believe you should ask for an MRI. They won't want to do it as it costs more than an ultrasound or internal scan but it will show more. It's not till they take can a tissue sample from the laparoscapy that they will confirm Endo. Be persistent, don't be fobbed off like I was ... for 2 years. I don't know enough about Endo or Microgynon, but I don't eat bread, or Soya, Soy products or things high in Estrogen as I believe they were feeding it and making things worse. Please keep me posted. Nobody should live in pain. You need answers and your Gynae sounds as useless as mine was. Best wishes x

coco2000 profile image
coco2000 in reply toMusic1

Thank you so much for your help! I have pm'd you!

coco2000 profile image
coco2000

Hi, thank you so much for this information. Do you mind if i private message you with a couple of questions. Thanks

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