Hormones. Is there a place for them in the treatment of endometriosis?

Have you tried going on the pill?

This is the question that any endo or adeno sufferer has heard many a time. It’s safe to say that most women of childbearing age that approach their GP, primary care doctor or general gynecologist will have had the pill offered to them at some point. For many this is offered before or instead of any kind of investigation is carried out. When I first visited my gynecologist I was already on the combined oral contraceptive pill. The doctor advised i continue to take this, but no longer take a week break between packs, essentially stopping me from menstruating.

The idea behind this is if you can stop a person from menstrating you remove their symptoms, which (sometimes) include severe period pain and heavy bleeding. The problem with this is many people’s symptoms are not only limited to period pain and bleeding. So i no longer menstruated but continued to suffer with chronic pelvic pain, pain during sex, urinary and gastric symptoms.

Another problem with this approach is it is often (as it was with me), used as the one and only solution. I have already discussed the struggle i encountered with getting a gynecologist to agree to perform a laparoscopy to investigate what actually was going on. If i had not pushed for this I may never have received a diagnosis. This approach also implies that surgical treatment cannot improve symptoms (which we know to not be true), meaning many women not only don’t receive a definite diagnosis but also miss out on potentially helpful surgical treatment.

The hormonal treatments offered to endo sufferers are not limited to the combined oral contraceptive pill, although it is often the first to be. Others include progesterone treatments which could be in pill form, (often referred to as the mini pill in the UK) and injections. The idea behind progesterone treatments is that this hormone will again (potentially) reduce or stop altogether a woman’s periods. It is thought by some that it can also reduce inflammation and suppress the growth of endometriosis deposits. This is certainly not a universal opinion amongst the medical community. Many surgeons may support the use of progesterone treatments to manage symptoms but certainly not as a solution in itself. It should also be noted that these sort of treatments (as with any) have plenty of side effects to consider and may in fact my symptoms worse!

The mirena coil is often discussed in relation to hormonal treatments for endo. I was offered this countless times over the last six years. Put off by horror stories online where women had bled constantly, found the insertion of it excruciating or found it made their pelvic pain worse. Eventually I agreed to have it fitted during a laparoscopy. The mirena coil is a t-shaped intrauterine device which releases progestogen (similar to progesterone) into the womb. Again it CAN reduce or remove all together heavy bleeding or period pain.Some patients stop having periods all together. Many people simply don’t get on with the mirena coil however. I am one of them. The first 8 weeks following having it fitted I didn’t stop bleeding, and found near to no difference in my chronic pelvic pain. As 2 months became 6 I no longer had periods at all but still had chronic pelvic pain that I still required opioid painkillers to control. By the time I had had it for 8 orso months I was menstruating every 7-10 days and in more pain than i had ever been. I can only guess how much of this was down to untreated endometriosis or the coil. Either way once I had discussed this with my surgeon we decided removing it was the way to go.

The thing I would say about the mirena coil is it is worth a try IF you’ve read up on the side effects and are prepared for it not to be a solution. I suppose the reason a lot of people are put off by it is the invasiveness of getting it fitted and the fact it’s not like a pill, where you can stop taking it if you decide its not working or the side effects are intolerable. Again I dont think its a solution in itself but i have spoken to so many people who have found relief form their symptoms.

When you discuss with people who are not familiar with all the potential treatments for endo they are often shocked by the idea that so many women are put in a state of temporary menopause. OFten considering it quite extreme and i suppose it is. GnRH analogues are modified versions of naturally occuring hormones which help control the menstrual cycle, when they are taken continuously they stop the production of estrogen. Starving the endometriosis deposits of estrogen is thought to stop them from growing or even reduce in size. As to be expected this treatment has many side effects, with many patients taking HRT or hormone replacement therapy to reduce these potential side effects. There is an awful lot of discussion about this kind of hormonal treatment online. This treatment is far more common in the US than in my home of Britain, many far more informed people than me have discussed the implications of using treatments such as these. Please have a look at nancy’s nook endometriosis facebook group, where it is discussed at length.

I’d like to make it clear i’m no doctor. The only person that can help you decide if hormonal treatment is suitable and which one is your doctor. I hope this does illustrate the mind field having endo is! Currently treatment options are limited to invasive surgeries or hormonal treatments where (sometimes) the side effects are worse than your symptoms. I’d also like to point out that many of these treatments are offered to women without any option of surgery to investigate and treat potential endo. There may be a place for hormonal treatments, as treatment for symptoms but I fear too many women are being offered a pill, injection or coil without any discussion of surgery.

Please check out Nancy’s nook here (you need to request to become a member but it’s definitely worth it!) https://www.facebook.com/groups/418136991574617/
Check out Endometriosis uk here with some good info on hormonal treatments https://www.endometriosis-uk.org/hormones#Progestogens

13 Comments »

  1. When they first assumed that endo was my issue 3 years ago they didn’t even so much as offer me any treatment. Not one. I have since been diagnosed with a tumor on my pituitary gland and still, no treatment has been offered. I have an inkling that if the word ‘baby’ was mentioned then they might jump to action.

    The pain that I felt when I ‘had’ endo has persisted throughout my diagnoses of the tumor. I get headaches, blurred vision and then the pelvic pain and bloating. It’s all hormonal imbalance to me so I would take anything to make that better. But alas nothing has been slung my way.

    I’m so sorry you’re going through this pet. I’m also sorry that I rambled. Posts like this just make me angry that we’re not taken seriously.

    – Nyxie

    • I’m so sorry you’ve had to go through this! The disregard that so many people experience within the health care system is so terrible!! And yes often the first question is “are you trying to get pregnant/ are pregnant?” As if that takes priority over all else. ❤️❤️

  2. ALL OF THIS. Just spot on, and I’m sure most women with Endo would agree. I don’t understand why some doctors don’t take our pain seriously.

  3. Sorry but I can’t read your post as I can’t see the words. I came from blogpostvoteup and would hate you to get bad reviews because of this. Please let me know when I can read it as my daughter is going through this now. (You can cencel my comment. It doesn’t need to show on your site)
    Thanks

    • Hi Janelle. Thanks so much for the heads up. I checked my link from blogpostvoteup on a few different devices and it seems to be working fine? Maybe you could try accessing straight to my blog at peskypelvis.com ? Hope you can read some of my stuff if it helps you or your daughter ❤️❤️

  4. I have had an iud for the past 3 years and it’s been hell. I couldn’t imagine having a chronic illness on top of it! You’re such a trooper!

  5. I have an iud and I hate it! My doctor talked me into it saying it would be cheaper and it wouldn’t effect me… well I haven’t had a period in 3 years and my cramps are horrible. Not to mention my mental state. I couldn’t imagine the pain of a chronic illness on top of this blasted thing!

    • I don’t know where you live but I’m convinced that here in the UK it’s pushed so much by GPs as a contraceptive because it is genuinely cheaper for them. Which is of course so wrong as it shouldn’t be about that.
      I’m sure it’s right for some I wouldn’t put someone off trying it but I really wish doctors would allow us going in without the wool over our eyes as it were. Hormones suck anyway even without the illness! Hope you feel like you can decide on another method of this isn’t working for you ❤️❤️

  6. I have read about the horror stories of mirena from my friends. I believe any Dr should give all the alternatives and what the potential side effects can be. So a patient can make a better choice and doesn’t have to go through such horrible pain.

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