Stupid question but...

[Jenn2022]

Why don't all endo sufferers who aren't TTC on the pill to stop the monthly bleeding? Surely bleeding each month just creates more endo, so the first thing to do would be stop the bleeding? My Dr is recommending the coil which "might" stop my periods, it also "might" make me bleed really heavily for 6 months. Is that really a risk worth taking? I've just started the combined pill which will stop my periods if I keep running the packs together. So why not just keep taking the pill? I know stopping the bleeding won't repair the internal damage already done, but wouldn't it stop it getting worse? Clearly I'm missing something about how endo works because it just seems really obvious to my uneducated brain that stopping the bleeding should be the first priority.

[ArtyPal]

Hey!

I'm waiting on my laparoscopy to confirm endo however we have been treating my issues as such for the past few years - moreso since the beginning of 2021 when I landed a fantastic gynae who has listened and helped along the way, but I thought sharing my experience may be good just as all bodies are different and it may offer up any answers, or at the very least will give you a space to chat (hello!)

sharing my side as I relate to your coil concerns and have went down the pill route as well but also I'm a rambler so I'm so sorry if I bore you!!

I was originally on Rigevidon for about 5 years, and 4 years in was taking them in three month increments rather than 4 weeks. Now I'm on Cerelle with no breaks at all and have been since February last year and I have had two periods since! (Three if you count the recent one when I ran out of my pill because I'm silly 🤣) so while it hasn't completely stopped them for me, it has certainly slowed it down!

I have found my period symptoms to lessen, and could definitely tell the difference between my Cerelle period and my "forgot my pill" period, the latter being excruciatingly worse - however one thing I'd note from being on this continuous pill is that the other symptoms of endo haven't stopped, and I have felt that some have gotten worse (whether that's down to the pill or time, I can't be sure), so for me that's the bodily aches, sciatica type pains, issues walking etc.

I have been fighting off the coil suggestions from various doctors and gynaes for years, with them settling on an agreement that I'll consider giving them an answer pre-surgery in case I want it inserted during which I most likely won't. It's more a personal thing over anything, I'm living in a body that feels uncontrollable at times, so I'd prefer to at least have control over taking the pill 😅

It takes a few months to see how the pill works for yourself, I was probably going on 4/6 months before things felt settled.

About 8 or so months in, I discussed that while my periods were better and the cramping and period pains had minimised, my chronic pains were horrible still and I was prescribed amitriptyline which has been helping amazingly - which is essentially my long winded way of saying to stick at it and that there are a few other ways to improve things

Always up for a chat if you need anything! I always found other people's experiences on here super helpful so hopefully this may help you in some ways xx

[Ckcs2016]

I totally agree with you. We are in 2022 we shouldn’t have to live like this.I have been taking ovranette for 20 years. Once I got endo symptoms I was told to take 3 packs back to back which I had been done for last 9 years it so. Yes I had painful periods but they were light and only for 5 days.

Now my last period has not stopped now on day 13 which sounds like nothing, but it is winding me up especially as you says this means pains too. I really wish I didn’t have the break. Going to ring the gp tomorrow to see if there is we can do. I am staying away from the coil, it seems there are too many complications. I just want it to stop and never have a break again until I get my hysterectomy date.

[Endo_Jaded]

I totally recommend you read the book ‘beyond the pill’.

I totally believe the pill is 100% responsible for many Gynae issues but I can only share my story.

I started the pill at 11 years old due to severe bleeding and pain.. the doctor did not think this a concern or wish to investigate, so on the pill I was put.

I was kept or talked into staying on the pill all throughout my teenage years even though I still had pain and still bled heavily. I was given the ‘extra’ pills mefenamic acid and tranexamic acid. Still no one really paid attention. I had to beautiful babies at a young age.

(I was told during a hospital visit after a catastrophic assault that my fertility was waning and the damage was going to make it hard to conceive the longer I left it).

I came off the pill at 23 and I can tell you the worst thing I ever did was go on the pill… the pill ruins moods, libido, attraction, bleeding and it masks endometriosis symptoms by about 70%. Yes, we think wow I can live but… you are living a dangerous lie. You haven’t a clue what’s occurring in your body or the damaging being done while hiding the actual issues.

I have obliterated the Enzian Scale for endometriosis as my surgeon says it’s the worst it can get and I’m awaiting a total hysterectomy and most likely bowel resection with open surgery because it’s too much for it to be done laparoscopically.

I believe the pill exasperates endometriosis especially with estrogen, as would soy product or anything containing too much soy or chemicals thus increasing inflammation.

Do I believe the pill helps? No, I believe the pill has done more damage than it’s ever helped.

I don’t believe the pill causes endometriosis (I’m a fifth generation sufferer and the fifth female to need a hysterectomy before 45 in my family) but it doesn’t have a positive role to play. In my opinion.

I do recommend the book - Beyond the Pill and I do also recommend Endometriosis book by Dr Andrew Cook also, both very informative and explanatory of various techniques, methods and alternatives.

Thanks to Dr Cook I’m not on Lupron/Prostap and experiencing the mass side effects but demanded Synarel as an alternative which isn’t always given out freely by Drs even though it’s significantly better for you especially if you have depression or bone density issues.

I refused the coil and have done continuously, several of the girls in my group have had the coil with negative experiences, it’s the most pushed method but it’s also the risky one if you have a uterus being pulled my adhesions/fibrous tissue. My GP and Surgeons all know my uterus is frozen it’s been yanked forward and down and back and makes it look like a egg stuck to a frying pan I guess, so a coil would be extremely dangerous but yet they still try and push it!

Doctors see many patients but they also are told by the hierarchy what they can and cannot do for budgetary or medical reasons too. If medical professionals could make whatever decision they wanted and answered to no one, many decisions would be starkly different.

Essentially, you as a person have to educate yourself on endometriosis, frozen pelvis, hydrosplanix, adhesions and everything else that goes along with this disease and advocate for you alone.

We all have opinions, we have all suffered differently and each case is unique to the individual but we can only share our experiences in order for you to have a more balanced, clearer view. It’s taken me 20 years to acknowledge and accept my pain and 5 years ago I finally demanded help and the discovered how much my pill had truly masked.. my 17 year old daughter hasn’t been on any hormonal contraceptives and thankfully no signs yet. But we will get her an MRI or specialist Ultrasound at 20 and then every 5 years if she shows any signs or changes.

I’m always here too chat and usually ok with any questions.

I wish you well on your journey, and definitely check out those book recommendations, I delayed and I wish I hadn’t. 😊

[Jane884]

There are still so many unknowns with endo. Personally my chronic endo pain started 1 year ago, whilst I was on the progesterone only pill. The first month that the pill stopped my period, was the month my chronic pain started and I've had pain everyday since. I came off the pill after a couple of months and haven't been back on it since. I have also refused the coil, and pushed for a diagnostic laparoscopy, which I had 3 days ago. I was diagnosed with stage 2 endo, possible Adenomyosis and my bladder is attached to my uterus by my endo. I have a theory that the estrogen in the pill exacerbates the endo more than the progesterone helps it, in some individuals. From what I have read, hormones aren't as helpful if you have daily pain with your endo, rather than just pain around your period.

[JulesUK]

That was one of the first things I tried many years ago but it didn’t work for me. I would still bleed. The doctor suggested more frequent breaks (can’t remember details but along the lines of take two months then break, repeat. ). Not sure why it doesn’t work for everyone. For me personally the coil was life changing and settled very quickly. Within a few months no bleeding and pain free though I appreciate this isn’t the same for everyone.

[Busy-Lizzie]

Hello Jenn

Sampson's theory of retrograde menstruation, from 100 years ago, hypothesised that retrograde menstruation was responsible for causing endometriosis to flourish, and has since been disproved because it would be borne out by more endo being found with increasing age, and that's not the case.

The pill is frequently used to suppress ovulation long term (i.e. for more than 12 months) after surgical removal of endometriomas-endometriotic cysts-on the ovaries because it can help prevent recurrence.

And there's evidence that the progestin pill, or mini pill, reduces endometriosis.

[Missy100]

Progesterone only pills cause many women to have side effects which include bleeding, so it can actually make bleeding worse for some. Also there are other side effects to consider such as allergies and extreme mental health issues which can be complete change of personality, anger, dispair, and overwhelming obsessive suicide thoughts. These are all scary and are not positive or acceptable trade offs.

There are other medications such as Tranexamic Acid that can help with bleeding that many find help. I didn't see much change (if any) for the first couple cycles but afterwards the changes were huge, completely reducing and regulating my bleeding which I certainly didn't get with progesterone, despite trying different types.

Progesterone (I can not take any options containing estrogen)

caused me a whole heap of issues makjng both me and my husband miserble (massive personality change with ridiculously distressing mood swings I couldn't control) and causing me to start bleeding all the time again. It had zero effect on my ain levels.

Endometriosis creates its own estrogen, which it 'feeds off' and this can continue to occur even after menopause or a full hysterectomy. So, although no longer bleeding endo can continue to grow, spread, and reappear.

I m glad you've had success in finding something that helps your symptoms. Unfortunately often what helps one doesn't help another - and potentially causes further issues.

[Allerton42 in reply to Missy100]

Hi Missy100, glad to hear the tranexamic acid helped. How much Tranexamic Acid did you take during the first two cycles? was it just when you had your period. Did it also help with pain much? I'm taking mefenamic acid but haven't found it that helpful. I've also taken it a few days before my period as suggested.

[Missy100 in reply to Allerton42]

Hi Allerton,

When I was prescribed I had already been taking Mefenamic Acid first but it did not affect my bleeding. I do continue to take the Mefenamic Acid for pain relief along with other pain medication that was gradually added over time, to address the increasing pain symptoms and issues that became worse over the years.

This may be TMI but I was at the point of bleeding more often than not and I was passing large clots. I was bleeding through doubled (over lapped) night pads and tampons in a ridiculously short time and had resorted to sitting on towels at home. I also was anemic and ended up having an iron infusion. I say this as it may have impacted my GPs decision on dose. Rather than the typical prescription of taking it at a certain point of my cycle.I was prescribed it every day, one tablet three times a day.

I did attempt to take progesterone while on the Tranexamic Acid , after my cycles had long been sorted, and it caused me to start breakthrough bleeding that continued to become worse the entire time I was on it. It became worse each time I tried to take it (on three different occasions, but different types). It also increased my pain rather than reducing which I suspect, but don't know for sure, was connected to all the breakthrough bleeding. It took 2-3 weeks after ceasing the progesterone to have my breakthrough bleeding cease.

I hope this helps 🙂

[Allerton42]

Thank you for your reply. That's very helpful. I was on cerazette and couple of other progestins. It was 5-6months on cerazette before my periods stopped properly but I'm trying other things due to side effects and not wanting to take long term. Also waiting for surgery likely 18 months away. All the best.