Should I try the pill for endo pain? - Endometriosis UK

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Should I try the pill for endo pain?

Michelle_2022 profile image
23 Replies

seen a gyno today who advised the 1st port of call would be for me to go on progesterone only pill for a few months to see if this stops my pain.

I really didn’t want to go down this route in all honesty, i think clearly hormones are already messed up with the excruciating pain! Haven’t been on the pill for over 10 years.

Gyno said this would be 1st port of call, I asked about having mri she said endo doesn’t always show even on mri. Asked about laparoscopy, she said they would only do this after seeing if pill helps… thoughts / advice anyone? ❤️🤷🏻‍♀️

23 Replies
EternalSunshine87 profile image
EternalSunshine87

My endo journey started when I first came off the pill. Painful periods etc... I had ultrasound and MRI and thats when they found it all. I feel like you need to know what you are dealing with before you can prescribe something - but thats just my opinion. After not wanting to be on the pill, I am back on it because it stops my periods and that's when the endo is at its worst. I hope you find answers soon!

Jade2006 profile image
Jade2006

wow that shocking .

The pill just masks everything, a mri will show cysts and adhesions but depending who’s reading the mri .

You need to change your doctor and push to be seen at a endometriosis specialist.

I’m sorry you have to deal with ignorant doctors , complain to pals if your not getting anywhere .

It’s shocking how they treat us and leave us to suffer and get worse .

It’s a serious condition and needs to be taken seriously.

Good luck with it xx

Michelle_2022 profile image
Michelle_2022 in reply to Jade2006

this was at hospital I saw a gyno as I went up A&E in pain, & this is what the gyno said… 😣 feel so frustrated as this is not the route I want to go down, but feel like they are not giving me any options

Ecorc profile image
Ecorc

hey Michelle,

I was the same as you - off it for 10 yrs and they wanted me to go on it again but because they found an endometrioma on ultrasound they agreed to do a laparoscopy. I also wanted to try for a baby afterwards so refused to go on it.

It’s a toughie because although it’s good to know what you’re dealing with, laparoscopies can take a decent time to recover from and sometimes cause more complications like additional adhesions from the scarring from where they remove endo.

MRI does show it up especially if you have a lot of it so I’d push for that for starters.

To avoid the pill I saw a nutritionist to try and manage my hormones naturally. I’m completely gluten and dairy free now and low sugar/alcohol.

Unfortunately my endo has spread to my lung now so I’ve had to succumb to the pill to stop lung collapses but there are alternatives for you so don’t feel pushed into one option if it’s not what you want. Can you ask for a second opinion if you feel like that doc won’t assess other options?

Michelle_2022 profile image
Michelle_2022 in reply to Ecorc

thank you so much 🫶 so sorry to hear it’s got that bad… what pill do you take? Is it helping?

I know think I may wait and push for MRI at my appt in dec, which she seemed reluctant to do. As I don’t agree with masking the symptoms with hormones I’m 40 now & if I wanted to have a baby soon I need to hurry up! And don’t want my hormones to be even more messed up

Ecorc profile image
Ecorc in reply to Michelle_2022

totally get where you’re coming from! I’m the same, I hate putting artificial hormones in my body and I’m worried how long it will take to settle coming off them again to go through ivf.

I’m on desogestral. I’ve only been on it for a month and bled for 10 days of it! So my hormones haven’t settled into it yet. It’s made me v sleepy and my boobs have got bigger but those are my only symptoms! My lung hasn’t collapsed this month so it’s clearly doing something 🙏

Michelle_2022 profile image
Michelle_2022 in reply to Ecorc

that’s good to hear! fingers crossed it continues to help you… I just don’t know what to do head is in the shed 🤔🤷🏻‍♀️

Salamander88 profile image
Salamander88

For me the progesterone pill (plus mirena coil) is helpful to manage symptoms; this is whilst I'm waiting for my laparoscopy, but definitely doesn't mean it's the right thing fot everyone with endo (and it took some time for thinthings to settle for me). From what I understand if you haven't yet got a diagnosis (eg from ptevious scans or surgeries) but your symptoms strongly suggest endo they should be offering you investigations like ultrasound (usually first line but ideally needs to be done by someone very experienced, as many general gynaes will miss some types of endo lesions) and then potentially a diagnostic laparoscopy to see if there's endo there, if that's what you want. I don't know if MRI is done standardly and may be in some places but not others (or if you want to go private for it), interested in others' experiences. But again like USS it can miss things, which is why you still need surgery by someone experienced to be sure.

From what you mentioned above about wanting to have a baby soon I would make sure you discuss that with them too as with the v long NHS waiting times for surgery etc you might want to consider what your timings and options are on that front too

Michelle_2022 profile image
Michelle_2022 in reply to Salamander88

thankyou… the gyno basically said to me that the pill is first port of call then if this stops my symptoms then it’s possible endo !?… I’m like that’s all well and good but I don’t want to be on the pill. I would consider it if like you I was waiting for laparoscopy to manage symptoms in the meantime, but she was just didn’t seem very understanding tbh

Salamander88 profile image
Salamander88 in reply to Michelle_2022

Yeah im really sorry it dodoesnt sound like she was very understanding or reasonable - you are entitled to have your own reasons not to want to go on the pill and to seek appropriate investigations and a diagnosis regardless for sure. Can you ask for a second opinion? Wish you the best of luck and sending you strength and solidarity! Xx

Michelle_2022 profile image
Michelle_2022 in reply to Salamander88

thankyou! Yes think I will wait for my actual gyno appt in dec

Ecorc profile image
Ecorc

Ha I know what you mean! The docs give you one option but it’s not always the right one for you. Def keep asking around, I think the more you know about the options then the more certain you’ll fee which option is right for you!

Always here to bounce ideas off if you need ☺️

Michelle_2022 profile image
Michelle_2022 in reply to Ecorc

thankyou ❤️

LA_LA profile image
LA_LA

Get a new doctor immediately.

KlP28 profile image
KlP28

I feel ur pain! Been fobbed off with trying all sorts is contraceptive pills in the past. None helped the pain! One added to the pain with horrific migraines. Have u been offered the mirena coil? Helped with my bleeding & a little with the pain some months… x

Bubblepoppy profile image
Bubblepoppy

I had the pill and it worked for a while I didn't have any breaks in it either its the best way back to back but it stopped working for me not bad if you want a while off the pain for some people it was good for me for a while then stopped working still trying all sorts to get rid of pain at the min hophope your sorted out soon xx

Michelle_2022 profile image
Michelle_2022 in reply to Bubblepoppy

which pill do you have? Thankyou ❤️

Bubblepoppy profile image
Bubblepoppy in reply to Michelle_2022

I used to have the microganon ( sorry for the miss spelling) xx

Jade2006 profile image
Jade2006

if your trying for a baby don’t go on the pill .

If you have been trying for a long time 2 years or 1 1/2 years ask them to refer you for ivf xx

Emmaja_ne profile image
Emmaja_ne

I’ve been put on the pill while I’m waiting for my gynaecology appointment and it has helped. Although it ‘masks’ the endo I’d rather that then be in excruciating pain twice a month with ovulation and periods, it’s even eased the daily pelvic pain I was getting between ovulation and my period as well as helped with the bloating. I still get it but definitely not as bad

Michelle_2022 profile image
Michelle_2022 in reply to Emmaja_ne

that’s good then Emma, which pill are you having?

Emmaja_ne profile image
Emmaja_ne in reply to Michelle_2022

I’m on ridgevidon which I’m surprised is actually working as it’s a combined one and I was very sceptical due to the negative reviews and also side effects as I was already suffering from anxiety and depression before going on it.

I can honestly say my mood is a lot better. I was so down and miserable with the pain and my anxiety was through the roof, it was like a never ending cycle. I’m thinking of trying progesterone only pill to see if it will help get rid of the symptoms all together.

I contacted the hospital today to chase up my gynaecology appointment and have been told it will possibly be next year 😭 their still making appointments for patients who were referred in may. My referral was received the beginning of august.

Emmaja_ne profile image
Emmaja_ne in reply to Emmaja_ne

forgot to say I’m taking the ridgevidon pill back to back. Then when I have a break through bleed I have 4-7 day break and then go back on it x

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