Hi Ladies,
I am new on here and new to being diagnosed with endometriosis. The doctor has told me to take a back to back pill so I don’t have a period to take away most of the pain and then they will put a coil in after the surgery. I am really not happy with what my doctor has to say as I do not want to be on the pill or have a coil at the age of 19.
Is this right or normal, help !!!!
The option and choice is yours, you can say no if you don't want them.
But the fact they are suggesting these is normal, both are to try and ease the symptoms of endo.
Hi Mulliee, sorry to hear you're struggles and that you're not happy but I'm afraid it's quite normal practice. The aim is to stop your periods completely so that the endo doesn't grow or spread, this is even more important following surgery to prevent it from returning. The other option post surgery is Zoladex or Prostap which puts your body through a chemical menopause. It is likely that if the pill and coil do not work this would be their next suggestion. It's really good that they've diagnosed you quite early although I don't know what stage you're at.
I had surgery 10 months ago and have been on the pill and coil since but it's not working for me, I'm still bleeding and in agonising pain. The next step is Prostap which I'm not happy about but I I can't see or have been suggested another other treatment apart from hysterectomy and removal of my ovaries.
I'm afraid its he normal course of treatment and trial and error to see what works for you but if you don't stop your periods then your endo will most definitely return.
Hey Mel,
If you dont mind me asking...
I am in a similar situation as you in that the pills/coil do not work for me and they suggest injections for me too. Is this something you are worried about because of the fertility side effects? It seems that many have had troubles conceiving after this treatment. I am only 25, and dont want children right now but in a bit of a difficult situation as the pain/constant bleeding from the pill is becoming too much.
Im in exactly that predicament, its is awful. I'm 37, don't have children and I'm worried that if I don't try right now that I will have missed my window of opportunity. If I start treatment but decide later how long does it take for the drugs to leave the system and return to normal? I always thought that it would just happen naturally but the thought of having to tell the doctors and then go for another operation to further excise endo and flush tubes prior to trying to conceive is frustrating and even then it might not happen. I've had an ectopic pregnancy and 3 missed miscarriages.
What are your main concerns? My Consultant tells me pregnancy before 45 is still young and still plenty of time and options to conceive. I guess in that sense at 25 you have plenty of time to work out what you want to do but it never works out that way!
Sorry that you are suffering through this too 
The drugs take at least 9 months to leave the system and for "normal periods" to begin again. Even if you only have them once, it still takes that much time due to the very high dosage.
Surgery before trying to conceive for endo ladies is very common, apparently it gives your body a bit of a re-set and a best chance. But yep its an annoyance with no guarantee! In terms of age, yes I know people over 40 who have conceived naturally, but its quite rare in my opinion. If the drugs were a short term thing that can be out of the system in a month I would say just hold off and it will happen. But 9 months is the best case scenario! So sorry to hear of your miscarriages
I have stage 4, and so far my consultant wasn't discussing babies with me as I was ~20 when diagnosed. However, recently he was talking about it with me and apparently i need to "get to it within the next couple of years" if I am to have a chance. I'm not sure how true this is, but its scary as I know that I want children but didn't think it would feel so forced/pressurised/sad
Hi mulliee,
I'm in the same boat, I've not had the surgery yet but I am about to start a new pill and then see about having a coil fitted again if the pill isn't enough which is usually the case for me. I've tried the coil twice before on it's own but it didn't work that way for me, so my Dr said that his thinking behind it was the pill might help subdue the symptoms enough, to help the coil do its job. We shall see. I know it's daunting at first thinking you don't want to be messing about with your body like this. But really, at this moment in time stopping periods seems to be the way forward for us. And if that is achievable that's a win really isn't it? I mean, who out of us really want periods? 😋
Good luck!
Hi Le90
Thank you for you response, yes who wants periods ahah. I just thought being young and having all of these hormones in side of me could make it harder for me to have a baby when I’m ready. I want to get pregnant naturally, I hate the idea of having to go to your doctor todo a pregnancy plan for when I’m ready.
Yes I know where you're coming from, I felt the same way when I was first put on the pill when I was 15. I worried about the side effects and the future plans. But it's best to take it one step at a time, these methods are practiced all the time and in theory when you are ready to have a baby, as they've diagnosed you so early on and are trying to prevent more endo growing at this point, when the time comes that you're ready for a child, I'd say you'd have a pretty good chance of achieving it with all this help. Sure it's inconvenient to have to run it through your Dr first, but it could be worse. Maybe it would even make you feel more organised and supported having to do it that way? You won't know until the time comes anyway. It's best not to think too far ahead with these things. Focus on what's helping you now, I hope it works for you. Let me know how you get on, maybe we'll have similar experiences 😊
Hello muillie
These treatment options won't make it harder for you to become pregnant when you are ready for that later on. Both don't have an effect on your fertility, once removed or stopped but endometriosis can effect fertility.
Both are suggested to people with endo to try and slow stop the regrowth of any endometriosis that is removed during surgery. To try and preserve fertility and also try and control symptoms.
But as I said it is completely your choice, just wanted you to be informed that these don't effect your fertility.
Hi Millie,
Your treatment is exactly that. YOUR treatment. That includes the option to decline certain forms of treatment.
I have a few different reasons I do not want a coil, and have had a lot of difficulty every step of the way with medical professionals in the gynaecology field constantly putting 'and coil' or 'and possible coil' my paper work and trying to change mind. Luckily my family doctor has been more open to going through the pros and cons, answering my questions, and supporting me in making up my own mind. In addition, my husband has also been a huge support in coming to gynaecology appts with me (whenever I want him to) and point blank saying, look, she just said she has researched it and she doesn't want it so she is not going to get it. What are her other options?
So ask what other options there are to explore. Surgery, other medications, or perhaps even holistic options, etc.
Unfortunately a big part of the medication offered for treatment of endo is a birth control option or one that puts you into a false menopause. Aside from these types of medications, others can treat some symptoms like bleeding issues (frequency, length, amount, spotting in between) and/or pain. It will depend on your individual symptoms and the severity of each of them.
Alternatives to medication include: Microwave heat bags and/or tens machines for pai . Acupuncture may be able to help with some symptoms and there are a lot of people that have found a diet aimed at cutting out foods that can cause endo related flare-ups have been a big help to them.
At the end of the day what is right for or works for one person may not be helpful or right for the next. The only way to find what fits you is through research, trial, and hopefully success rather than error.
I wish you luck on your journey and the strength to stand up for yourself and ask for an alternative.
Thank you so much; this had made me feel at ease now! Quick one in terms of work. I have been signed out sick for the past 4months due to the pain and not being able to walk. Work is now getting on my case send me to private doctor to make sure im telling the truth. I honestly just want to leave and get my health together. What is your thoughts ?
Please read my last post about jaydess coil removal. I don't want to totally poopoo hormones but they are not a treatment for the endometriosis, they suppress endometriosis symptoms which can be useful but the endo will be present regardless and may also continue growing while the symptoms are masked. If your pain is severe you would need excision surgery (not ablative) to remove the endo and then perhaps persist with hormones in as far as they might help you manage pain and bleeding. Most of the time hormones won't help if the endo hasn't been removed surgically. See Nancy's Nook on Facebook to learn more and for help finding a good surgeon.
To be honest I am not sure where you might stand in regards to your employer and them insisting you see a specific doctor. I would first review your contract of employment to see if there is anything written into it in respect of this. I know that there is potentially special circumstances for positions in certain fields. Next, I would contact the Citizens Advice Bureau as they will be able to give you free, impartial advice on the situation.
As for whether you stay at work or leave, that is something you should discuss with your doctor. They may deem it appropriate to sign you off work for the foreseeable future (due to your physical health, your mental health (such as because of the stress and/or depression your symptoms are causing or a combination of your physical health and work issues) or a combination of physical and mental health together.
If you have another means to support yourself such as savings, your parents can help you, or your partner is able to support you financially while you are trying to improve your health, you will not need to worry about any of the concerns related to benefits. But if these do not apply to you, you might qualify for some form of benefits. It is not an easy road, though.
Before receiving any assistance, there is a waiting period (which can vary). Also, in addition to trying to juggle a small amount of benefits with household living expenses, you will eventually need to undergo an assessment regarding whether you meet a set selection of criteria to qualify to remain on the benefit for medical reasons. This starts with a form you need you complete and examples of the form and how it is marked (on a points system) can be found on line. It then usually progresses to a face to face interview. Your doctor's opinion that you are not fit for work will not necessarily match the opinion of your benefits assessor.
As to what you may qualify for, how to apply, and how you can be affected if you need to apply for benefits due to your health, the Citizens Advice Bureau, MIND (if mental health related) and a few other google searchable non-profit sites should be able to help with the most up to date advice.
If you do apply for benefits make sure you are honest and blunt about how badly you are affected. This is not the time to be shy or embarrassed. Include all of your symptoms, how they impact your ability to function and work, and any medication you take with any side affects that impact your ability to function. You will also have to sign paperwork allowing your doctor to release your medical records to them for their review. They will be judging you to see if you can perform ANY job, not just the one you last worked at or types of work you have experience in.
Endometriosis-UK (.org) has a write up on endo and disability (endometriosis in not currently classed as a registered disability in the UK) which you may find helpful as well.
I know how debilitating endometriosis symptoms have the potential to be and how much those symptoms can impact a persons mental health. Unfortunately the world is still filled with people who think it is just a woman being overly dramatic about a bit of period pain. But you, me, and countless women who suffer first hand at the mercy of the condition know it is a far different story.
Good luck navigating it all, but please let me know if I can offer any further help.
Hi, Do what you want to do. It is your body. I didn't want the suppression they recommended -hormonal meds suppress symptoms. It doesnt stop the illness, or cure it. I opted away from hormonal meds and I have not once regretted it. I took an alternative approach and got better symptom relief and no side effects which get with hormones. Lara Briden and Wendy K Laidlaw are 2 good pioneers in this field of treating period problems in a natural way without hormones. Take a look and then go with what feels right for you and the way YOU want to manage it. You can always go to medication if a natural approach doesn't work for you.
The pill really helped me, my pain was much more less and only had a flare up every 3months on the pill break. I am also on the back to back pill.
Could you tell me how big is the size of your endo? I had 2 grapefruits size of endo cysts on both ovaries and all doctors i had visited told me to havr a surgery but i refused it 3 years ago. There are ways to heal endo... i have used some herbs and gone through some alternative therapies like bioresonance and homeopathy, also changed my diet to a gluten and diary- free for 3 months. The cysts started to get smaller. By the way, i got naturally pregnant, and pregnancy also helped with the cysts's getting smaller. There are many natural ways to try before applying hormones or coil or surgery, but your devotion for the self-healing is the most important need to take you to your recovery.
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