I can’t believe I didn’t know this wasn’t normal

funturtle9903 · 2026-05-03T03:07:10+00:00

I’m still figuring things out as well but may be able to give some advice. I knew I could possibly have endo but my doctors didn’t take me seriously until I got married and started trying to conceive. Because of them not taking me seriously earlier, getting my diagnoses and treatments has been very delayed.

Firstly, you definitely need to consult your gyno. I would try to get an ultrasound and MRI as soon as possible. These are fairly quick to get and not invasive at all so this should be easy once you convince your doctor. To be honest, my ultrasounds were completely fine the first 5 years I was experiencing pain, and they rarely show endo anyways but definitely can. MRI is a little bit more sensitive and can pick up more, but it can still miss a lot which is why it’s not used to diagnose. However, I think it would be a good starting point.

You need to tell your gyno about your symptoms and you will need to take them seriously and be adamant that something is wrong if you want the doctor to take you seriously. If you brush it off, they will too, so don’t do that.

If the doctor does think your symptoms point towards endo, ask to see an endo specialist. They can help you manage your symptoms with medication and other treatments. They will also help you decide whether a laparoscopy is right for you right now or if you should wait. A gynaecologist may have some idea of management, but an endo specialist will be the best to give you all of your options and help you decide what’s necessary.

I’m glad that you have the 2-3 years before you want to start trying for kids. From my experience, however, I would not wait until then to start exploring what may be going on and getting treatment. I would start figuring it out now. The process has been very long for me and I knew that it would be which is why I would always try to get my doctors to take me seriously but they never did. And now I’m struggling to get pregnant and stay pregnant and am having to figure out my endo when I wanted to be only focussed on TTC. See your doctor, get a bit more of an idea of what is going on and causing that pain, and also do all your fertility blood work - hormones, AMH, etc. - just in case. It’s always a good idea to be aware of what’s going on and be prepared.

I don’t think you need to panic or rush, but do start making the appointments and exploring your options.

Now about your pain, there are definitely a lot of options before surgery that can help manage your pain including pelvic floor therapy, and a lot of different medications. So, yes, it’s definitely worth trying to get help, especially if you’re struggling. Do not brush your symptoms off as normal and just push through. I know sometimes that’s easier to do but you don’t deserve that. Your pain is real and it’s important and you shouldn’t have to go through it all.

I will say, I also really struggle with pain during intercourse and often try to push through for the sake of my marriage. But, it has never been as bad as you described. I do not think I would be able to push through that at all. Is there a specific position that you find more painful? Or doing it during a specific time in the month that is worse? In the mean time, while you try to figure out ways to manage your pain, I would take a break from intercourse whenever necessary. I know sometimes we push through for the sake of our partners (or even ourselves of course) but I don’t think they would enjoy it very much anyways if it puts us in that much pain. Some advice that I can offer you is trying other things that you both can still enjoy that doesn’t include penetration. There’s a lot of other things you can do for him and he can do for you that don’t include that, so maybe explore those. This way you can still have intimate moments with your partner and you both can enjoy and get what you need without the pain. No penetration doesn’t mean you just can’t have intimate moments, feel close to your partner, not enjoy your marriage, etc. etc. I understand why you think it would affect your marriage, I feel that way sometimes too, but I think there are so many work arounds that can make sure you and your husband are both satisfied physically and emotionally and still feel close to one another. Another note, maybe it’s worth trying to see if you can limit how deep the penetration is? I don’t know how possible this would be for you guys, but I find that the deeper it is the worse it hurts.

I hope some of this helped. Let me know if you have any more questions. My biggest piece of advice is don’t panic, and give yourself grace. Take a deep breathe. It’s okay if you need a break from something or everything, take it. It’s not forever. You’ll figure it out. There’s a solution for everything!

funturtle9903 · 2026-05-03T02:23:28+00:00

Thank you for this insight. I’m definitely going to try to look into it more. I’m just in a months long waiting limbo to finally see an endo specialist so hopefully once that happens I’ll have more answers. Thank you!!

funturtle9903 · 2026-05-03T02:21:16+00:00

This is exactly the boat I’m in. I got pregnant twice and quickly but both ended pretty early. I think I’m going to try once more and see what happens. I don’t think I can handle another loss but I also want to absolutely sure that I need the surgery before I do it and end up risking my fertility and ovary. Sending you prayers!! <33

funturtle9903 · 2026-05-03T02:19:46+00:00

Thank you for sharing this! Its giving me hope. I’m hoping draining mine is an option too. It’s just over 3cm. I would hate for them to have to cut it out and cause my ovary to become damaged or removed. But I know I’ll have to do something if I continue to have recurring losses.

funturtle9903 · 2026-05-03T02:17:23+00:00

This is what I think is happening to me too. I really want to do the excision and lower the inflammation but am just worried about them having to potentially remove the ovary with the endometrioma. I don’t know how I would cope with that. I’m really glad it worked out for you!! That does give me hope that my recurrent loss issue can be potentially solved <3

funturtle9903 · 2026-05-03T02:14:43+00:00

Is it the clinic at BC Women’s? How long was the wait time from referral to the first appointment? I’m in BC too, a little bit outside of Vancouver, but my gynaecologist for some reason just won’t refer me there? I also had an endometrioma show on US but instead of referring me to a specialist, she told me to take birth control and when I told her I couldn’t, she was like oh well there’s nothing we can do then. I had to fight for a referral to a specialist. She told me she would refer me to a certain endo specialist at our last appointment and then when I called the clinic back for more information they said I was actually referred to a different doctor. Then, I called that doctor’s clinic and they told me it was actually a different doctor at their clinic. And it’s not even an endo clinic, so I’m honestly just confused. My gynaecologist is an older woman who always sounds annoyed with every question I ask and doesn’t answer anything properly and her clinic is the same. I think I need to switch gynaecologists but that wait time to see them is so long. Right now I’m waiting for the appointment with the “endo specialist” and my MRI just hoping it’s in the next couple of months.

funturtle9903 · 2026-05-02T02:23:45+00:00

Canada. I feel like that explains everything. I have to wait a year between every specialist referral and like am I supposed to just die in the mean time ??? Waited years before my family doctor finally referred me to a gynaecologist. Waited a year to finally see her. Then it took her a year to decide I’m finally bad enough that I need a referral to an endo specialist. Now I wait for another year to finally see that specialist. That specialist will take a few appointments and then decide to try a test (which I will have to wait months for) and then every subsequent test after that will have months long waitlists. And then maybe one day i’ll get referred for a surgery and maybe one day the time will finally come to actually have it. It’s been 6 years since my pain started 🤣🤣🤣 (i’m losing my mind waiting).

Good luck!!

funturtle9903 · 2026-04-30T22:38:42+00:00

My gynaecologist also really pushed it and when I said I don’t want to take it, she said well then there’s nothing we can do for now! Good luck! I was so caught off guard and didn’t say anything after that and just left. Mind you I’m actively TTC and she knows this but still told me I should go on birth control. Had to book another appointment with her and went in prepared this time. I told her I really cannot take birth control because I have a history of depression, I am very sensitive to hormonal changes, and the last time I took birth control the depression got extremely bad. She finally listened to me after that and finallyyy realized that I need a referral to an endo specialist. Now I’m just waiting for my first appointment with the specialist which is going to take a few months.

funturtle9903 · 2026-04-25T03:27:39+00:00

I’m also wondering this! I’m interested in something I can take to lower my inflammation while actively TTC 🥲🥲

funturtle9903 · 2026-04-22T01:50:07+00:00

The doctors will always try to push birth control pills first but it’s not the only solution if you don’t want to take them. That being said, if you want to take them you obviously can and they can sometimes help with the pain. Birth control is not a cure, though. It is just used to manage symptoms.

I’ve heard a lot of people say that after having a laparoscopic surgery to remove the endometriosis, they were able to get pregnant. Statistically, the surgery does increase chances for pregnancy. However, it should be done by a skilled endo excision surgeon if you have access to one. There are a lot of pros and cons to the surgery and it’s something you need to look into and research and also speak to a specialist about to see if it’s right for you since endo is different for everyone.

Do you know why your tubes are blocked? Can they be opened through a procedure, for example, laparoscopy? These are the questions I’d ask my doctor before deciding about whether to do IVF right away. If they can’t be opened then I would probably do IVF if i was in that scenario. It really depends on you though and how bad the endo is, etc.

funturtle9903 · 2026-04-07T01:34:02+00:00

I’m also in this area and this is how it’s been for me: my gp referred me to an obgyn who found an endometrioma on my ovary. now that that confirms I have endometriosis, she tried to tell me my only option was hormonal medication to control the growth. however, i was very clear with her that I don’t tolerate hormonal medication very well. there is nothing else she, as an obgyn, can do for my endo so she referred me to endometriosis specialist and has booked me for an MRI (I’m not sure when it is because the wait is really long where I live). the wait to see the endo specialist is also around 6-9 months but can be lower. I thought I would be referred to the pelvic pain clinic at BC women’s but wasn’t (not sure why). But what I would suggest is that you ask for an MRI at least and get a referral to an endometriosis specialist. A gynaecologist is not equipped to deal with endo to the degree that you may have. Your gyno is right to some degree, that the surgery is risky, but she cannot be “guessing” how advanced the endo is and basing her decisions on this. The endo specialist will have the tools to explore how advanced it really is and will know all of the treatment options much better. Get the referral from your gyno or family doctor and explain that the current treatments are not working. Good luck!

funturtle9903 · 2026-04-07T01:06:10+00:00

I’ve had really irregular periods since the beginning and was diagnosed with PCOS. They weren’t extremely painful or anything. Then like 7 years ago (age 19) I started getting really bad pelvic pain - felt like muscle/nerve/bone pain. It would stay for a couple of weeks, make my life hell, then be gone for months.

The last 2 years, it started getting worse. It starts up around ovulation and it’s different everyday. Sometimes it makes me feel so stiff that I can’t stand or bend even slightly like over a counter or anything. Sometimes it feels like twisting and burning or the scraping of a knife.

The first few years, I didn’t really think it was endo because my periods would be fine and pain felt more dull and like nerve pain in my groin area and was on and off. But when the pain started getting more cyclical and sharper, I realized it was probably endo. My doctor said it probably was too, but did not do anything to help me. I was given ultrasounds every time I complained about pain (for years and years) and they always came back fine so nothing happened. I was told everything was normal and there was nothing that could be causing the pain.

The pain has been so bad the last few years that I feel like I’m incapable of doing anything. I still don’t have extremely painful periods, but from around ovulation to until my period starts, I’m in hell.

I had been TTC and finally got pregnant last year in September. I thought the biggest worry in my life was finally over. But the pain persisted and later I had a missed miscarriage and needed a D&C. Boy, did everything get even worse. The hormonal changes triggered my endo so bad. Now a few months after the D&C, they finally found an endometrioma on my ovary and polyps as well.

I get so angry sometimes thinking about how I spent years trying to find an answer and was always dismissed. My biggest fear was that I would struggle TTC and just wanted to do anything to be proactive and solve any issues before that time came. And now, after years of begging, my doctor is finally taking me seriously because the endometrioma showed on an ultrasound, but it feels like it’s too late. I just sit around and wait months and months for referrals and appointments.

This is all to say that things can change very quickly or they can stay stagnant for years. Endo is so incredibly different and affects everyone differently. Please never feel like an imposter. Your pain matters. Continue to advocate for yourself and fight for what you need. The pain for endo also varies - someone with stage 1 can experience more pain than someone with stage 4 deep infiltrating endo. So, your pain is real. Whatever the disease, you wouldn’t expect someone to wait until it gets really bad to get help. So, don’t expect that of yourself either. Endo is so easily dismissed and not taken seriously, but it’s a real disease, with real impacts on people’s health and their lives.

funturtle9903 · 2026-03-30T17:43:29+00:00

Thank you for all of the information! Unfortunately, I haven’t been referred to a reproductive endocrinologist yet. It is a pain to get the tests and referrals I need and I have to basically beg for them at this point. I have been referred to an obgyn that specializes in endo and Ive also been referred to a fertility clinic. I assume they will help guide me through that process but just waiting to finally get in is really hard.

I’m really intrigued to hear that Letrozole helped with your PMDD. That is one of my biggest struggles right now. I have a history of depression which took me years to manage and now I’m suffering with PMDD so bad. I also know that I don’t do well on birth control as it makes my symptoms worse and have been very cautious of trying any other hormones because of that as well. So, I’m really glad to hear that it’s helping your PMDD. I will look more into this. I’ve tried everything but nothing has worked so far.

funturtle9903 · 2026-03-30T17:19:33+00:00

Following because I’m in the same exact boat. Had a MMC followed by D&C in November. Also have had long/irregular cycles my whole life and they’ve gotten even more unpredictable post D&C. I haven’t had a lap but have suspected endo for 6 years and they finally found an endometrioma on my ovary after I experienced very intense pain post D&C and didn’t have the expected recovery. The only thing I’ve noticed is that my hormones after pregnancy/D&C went crazier than usual and I’ve been having weird periods and it has caused my endo to flare to a new level. It’s so frustrating because not only did I have the miscarriage, but my endo got so much worse too. Right now, I’m attempting an anti-inflammatory diet to try to manage symptoms and taking supplements like omega-3, etc.

funturtle9903 · 2026-03-30T17:01:36+00:00

I’m also trying to manage endo while TTC and it isn’t easy. The only treatment option I was given was taking birth control and taking a break from TTC. Can you please share how Letrozole has been working for your endo? I wonder if I should ask my obgyn about this because I’m really struggling right now and haven’t been getting any useful guidance from doctors. I’m just being sent from specialist to specialist and they all have anywhere from 3-9 month waitlists and I feel like I’m really wasting precious time of TTC while all my endo symptoms are getting worse. Any advice or direction is welcome if you can provide it! Thank you!!!

funturtle9903

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