Very confused :( Does this sound like endometriosis? What should I do?

[Amywoodx]

Hi guys, hope you are all well. So this is a bit of a long story, I hope some of you can help with my situation as it is really stressing me out:

About 5 months ago, I woke up with sudden diarrhea and abdominal cramping for about 4 days. I recently realised this happened on my 3rd day of being on my period. I initially thought this was a one-off and carried on as normal, however it kept continuing throughout the week and I knew something wasn’t right. Eventually it subsided and I was going through alternation between constipation & diarrhea. A week later I woke up again in excruciating pain, wasn’t able to have a bowel movement, passed out on the toilet etc. I don’t remember having any bad period pains, just abdominal pain die to the diarrhea etc. So this didn’t really go away, I still experience digestive issues and stomach/ lower abdominal pain when I eat to this day. Doctors suspected IBS and put me on colpermin which gave some relief but not massive relief. I did begin to notice my stomach played up a few days leading up to my period.

I then started to get pelvic pain when I went to wee but only sometimes. Thought maybe it was a UTI but nothing.

Now all of a sudden, my last three periods I have experienced have been the worst amount of pain I have ever dealt with in my life, words can’t describe the pain it was excruciating. Also had an increase in vaginal discharge between periods. My last period was so bad I was vomitting and passing out every half an hour. Couldn’t get out of bed. Awful lower back pain coming from deep within. Dull constant leg pain. Hurt when I went toilet. Had blood clots for days. Experienced pelvic pain a week after my period was over.

So about 2 weeks after this terrible experience, I was booked in for a sigmoidoscopy because of my bowel problems mentioned before. During the procedure I was fully awake, no sedation or gas and air, and the pain I felt was very similar to the period pain felt during my last period. I was in absolute agony and screaming in pain during the procedure. I had pelvic pain on and off for the rest of the day, which was annoying as I felt like I had only just recovered from my period pains which lasted over a week. This is what lead the doctor to believe I definitely had endometriosis, as he told me it shouldn’t have been that painful and he also aware of my recent pelvic and period pains.

I was then referred to a gynaecologist, who was a lovely lady, but was adamant that it wasn’t endometriosis, told me nobody was going to perform a laproscopy to check and even if they did, they wouldn’t be able to do anything to help except put me on the pill. She referred me to have an ultrasound scan at harley street by a doctor who she said is very experienced in picking up endometriosis & she also prescribed me tranexamic acid, mefenamic acid and told me to go on the patch (the pill in a patch form) to help with my pain in the mean time.

So during the scan in harley st, they found that I have polycystic ovaries and both ovaries were enlarged. Both ovaries had more than 20 tiny cysts. He also told me he doesn’t think I have endometriosis despite my symptoms, the thickness of my endometrium was normal, polycystic ovaries in young girls are very common and that everything else looked fine. Also had a blood test and no hormonal imbalance (which I was seriously surprised to hear as I have been feeling very irritable, angry, depressed and anxious a lot more than usual recently but I guess this is all down to the state of my health at the moment and the uncertainty in diagnosing)

I started my period earlier today, put the patch on immediately (first time wearing it) and taken the tablets however I can feel my pain getting increasingly worse as it did the last month. Hoping it doesn’t reach that level again cause I can’t deal with that again! (update; just been taken to hospital by ambulance cause pain was so good I fainted and had a heart rate of 38 lol hate this)

Now as you can imagine, I’m not sure whether the pain is due to the polycystic ovaries or endometrial tissue??? I also don’t get pain in my pelvic area when having a bowel movement any other time except on my period.

I’m very confused about the whole situation. I know that PCOS (which I don’t have any other symptoms for apart from the cysts being shown on ultrasound) and endometriosis can occur together. Just wondered if anyone else has been through a similar journey or what you think is going on? Is it more likely to be endo or PCOS? Or IBS?

I’m like 85% sure it’s endometriosis because of the pain I feel when I’m on my period and all the toilet problems I have during my period. I also have digestive problems and a constant change in bowel habits which also leads me to believe its endometriosis. However, now that the polycystic ovaries have been thrown into the mix I’ve been thrown off.

Just a bit of background info; I’m 22, I started my period at about 11 years old, don’t have any relatives with endo and haven’t previously previously had extremely painful periods where it would interfere with my daily life until the past 2/3 months. I did have very sharp pain in my lower right side at about 14 years old where I was taken to hospital because it was so bad and they nearly took my appendix out but it eventually subsided so they decided not to operate. I then had similar but less excruciating pain at 19 years old, it was manageable. Went doctors she told me it was probably a twisted ovary and I was fine after. My periods haven’t been super irregular, sometimes they’d come a few days later or earlier each month but that’s about it. Never had extremely heavy periods either until recently either, now my blood clots last for days. I have also lost a LOT of weight in the past year going from 67kg to 47kg, I did diet for a while where I went down to 53kg but then lost the rest because of the digestive problems etc just found that I was eating a lot less. Not sure if this has anything to do with it either.

I was thinking of going to an endo specialist however I just have a feeling nobody will perform a laproscopy on me to check so at the same time I’m thinking what’s the point. Even if they find something what are the options other than the long process of birth control which can eventually wear off anyway and cause symptoms to return? 😕

Any advice or help would be really appreciated as I am feeling super stressed out about this and it is really affected me mentally 😊

[Warrior50]

Hi Amywoodx, so sorry to hear you’re having so many awful probs, sounds like you’ve really been going through a hard time 💜. I was wondering, when did you last have a “Smear test”? If you’ve not started having them yet, maybe you could ask your GP if it would be worth you having one? x

[Amywoodx in reply to Warrior50]

Hi! I haven’t actually had a smear test yet, nobody has even mentioned it to me. I’m also a virgin so not sure if that makes them reluctant to do one as this is why they didn’t do a pelvic examination either. Does it help with diagnosing endo?

[Warrior50 in reply to Amywoodx]

I’m not quite sure if a smear test would help with diagnosing Endo, but, by having a smear test it would show up any other problems, if there are any, which could be the reason for your symptoms and not Endo, if that makes sense? xx

[Amywoodx in reply to Warrior50]

Ohh yep I get you, will look into that, thank you x

[Warrior50 in reply to Amywoodx]

No probs hun, take care, let me know how you get on if you’d like to 😊x

[Thecraftyadder]

So sorry to hear this. You can have endo and PSOC, and endo with IBS. I spent years dealing with doctors not helping me. I was refused a lap in the country I now live in and told I didn't have endo. Pain was blamed on IBS when I was in my teens and then cyst ruptures during my 20's and early 30's with a brief mis diagnosis of appendicitis along the way. My main symptoms initially was terrible diarrhea during my period. I would get episodes of excruciating deep right sided pain with vomitting. I've also been through a sigmoidoscopy, endoscopy and full colonoscopy (such fun!) Before I had surgery in 2018 my bowel movements during my period would make me cry with pain and I was getting some pain with weeing to. I had deep endometriosis of my right uterosacral ligament. This is known to cause lots of IBS type issues. It had spread close to my ureter hence the pain on urinating from the inflammation. Like you I have no relatives with endometriosis.

It doesn't sound to me like your gynaecologist is a specialist in endo. Sadly there is so much ignorance around the disease and you have the added complication of PCOS. The only way I got accurate information and help was to see a endo specialist privately in the UK. It cost around £180 but it set me on the right track because he understood the disease and its many symptoms. If that's possible for you then look up the BSGE website for the endo centres in your area then Google the specialists there to see where else they practice and the costs. If you can afford it, it would be worth having a conversation with one of them to determine what symptoms are attributed to PCOS and what could be endo. Maybe get some advice on treatment options. If that's not possible financially can you ask your GP for another referral to get a second opinion from someone who at least has a special interest in endo? It's sounds to me like you really need more knowledgeable advice.

[Amywoodx in reply to Thecraftyadder]

Wow sorry to hear what you went through and thanks for the advice. Just been taken to hospital because of my excruciating pain on period and think looking for an endo specialist is probably my best option as everyone is still dismissing it so will try to do that. Thank u x

[deafhound]

Hi Amywood,

I am so sorry you are experiencing all of this. I'm new to all of this endo stuff myself, but I relate to many - if not all of the symptoms you describe. Weight loss too - Its a battle to keep my BMI up at 18.

It doesn't sound to me that your first gynae a) has experience with endo b) is willing to journey with you to learn and fill in their knowledge gap. To. If you cant see you can't know, end of story, so she could not clinically rule out endo.

Ultrasounds cannot be relied on to see endo.

Hormone tests cannot be relied on to diagnose endo.

Contraceptive patches are not guaranteed to ease sympoms.

I know nothing of PCOS and i'm no expert, but you are still young and your health is important. Step back, take a breath and get a second opinion from an endo specialist gynae. *If* that leads you to a different diagnosis/answers, write a polite factual letter to your first gynae thanking them for their effort to help but informing them of what susbsequent tests have found.

BTW how did your other doc know you 'just' had a twisted ovary? A twisted ovary is not something to take lightly! It's true they can 'untwist' without treatment, but ovarian torsion is considered a mediacal emergency as blood supply could be cut off to ovary.

Best of luck.

[Amywoodx in reply to deafhound]

Oh gosh was hoping for some relief on the patch, thank for your reply, yeah looking like my only option now is to go to an endo specialist! Hoping to get some answers soon, as things just seem to be getting worse.

[deafhound in reply to Amywoodx]

I should have worded more carefully....I dont have experience with the patch - its just that Birth control hormones don't help everyone and can aggravate things for others. That's what I meant by can't be relied on.

[Amywoodx in reply to deafhound]

I just have a feeling nobody will perform a laproscopy on me to check so at the same time I’m thinking what’s the point. Even if they find something what are the options other than the long process of birth control which can eventually wear off anyway and cause symptoms to return? 😩😩

[deafhound in reply to Amywoodx]

Hey i'm currently battling with the decision of whether to have a lap. I'm lucky in that my docs are actively encouraging it. But yes, like you I have been feeling - well what's the point anyhow - how will it change the outcome?

But taking a longer view...if endo is there, it endo can continue to grow even if birth control eases the sympoms (endo tissue can produce its own eostrogen), so to the best of my knowledge so far, the best treatment option is excision surgery to remove the endo.

Set your sights on getting a second opinion. One option is to get a private consult and then on the basis of that go back to the NHS for a lap.

It all might take you some time, but the fact that the doctor said what they said at the bowel procedure is really significant. Maybe the gynae thought another specialist was stepping on their toes? who knows? But you can take that info and use it to back up your concerns, ask questions and get the 2nd opinion/referral you need.

Stay strong. Trust yourself - you know your own body. xx

[Katecahill]

I’m so sorry you’re going through this! As someone who just had a laparoscopy 1.5 years ago and had been trying to get one done for 20 years, I really empathize with you on this. Keep going doctor to doctor to find one who will do the lap. Otherwise, you won’t know and believe me when I say, it’s better knowing. They can also so ablation for the endo they do see to help with the pain. Also sounds like you may have Polycystic. Anyway, i would find a doctor who will do it and just keep seeing doctors. I finally found one who suggested it after I gave up! I actually started crying. I do have it and was then at silly able to make my own choices about treatment. I only hope you are given the same opportunity.

[Amywoodx in reply to Katecahill]

Omg glad you finally got it done - just wondering has the lap helped and how do you manage symptoms? X

[DigitalFootprint]

Find a MALE endo specialist. Ask your GP to make a referral - they can't refuse.

I found my.self being dismissed by female gynaecologits. They were putting my symptoms down to age and hormones.

I then spoke with a nurse at the hospital and she advised me to find a male gynaecologist who specializes in endo. She told me that male Drs seem to have a better understanding than female ones and that she would never go to a female gynae.

Anyway long story short I saw a male gynaecologist and low and behold he suspected endo put me down for a laparoscopy and guess what? Yes I had endo and also an ovarian cyst that the ultrasound and CT didn't pick up!

I wish you well xxx

[Amywoodx in reply to DigitalFootprint]

Thanks for the advice, just wondering if they usually find endo do they remove it during the laproscopy and also do they remove the cysts too? X

[Rin9]

Sounds like Endo to me. I had a lap 4 months ago they found and removed endo. Unfortunately now we are just trying different birth control to ease my symptoms as they haven't gone away. Always find a male doctor. I have a lot of health problems. I find that women doctors are more concerned with treating the symptoms and making you feel better. They don't try to fix the problem. Male doctors don't care how you feel they just want to fix the problem. Which in the end is what you really need anyway. I refuse to see female doctors anymore. I don't want pills to feel better I want to be better. Be your own advocate don't stop pushing til someone listens. I wish you the best of luck.

[Amywoodx in reply to Rin9]

Hi! I know a lot of people have said they hadn’t felt the full effects from the laproscopy until about 6 months after, maybe this could be why you’re not feeling much better yet? Either way don’t lose hope, it could still improve and I hope you find something that works for you! it must be awful still feeling horrible even after the op 😞 x

[tig0512]

Hi!

Your symptoms sound similar to mine however yours sounds more intense unfortunately. I am also 22 and can understand your frustration - as someone has mentioned, you are often told your hormones aren’t settled because you are so young but how long can we wait/ be ignored for? I am having a laparoscopy in 2 weeks time to diagnose/ treat endometriosis, my surgeon has told me that from my symptoms he expects to find endo when he goes in (can keep you updated).

I have a very understanding (male) gyno so A few things:

You need to make sure that when you get a laparoscopy that they are also treating it when they go in to diagnose - don’t settle for less if you can help it!!

Also, you can’t be diagnosed with endo through an internal ultrasound, this will just rule out any cysts etc - it can only be diagnosed with laparoscopy.

I think the main thing is to try and push for a second opinion or a professional!!

Sorry to hear you’re going through this, I can understand what you’re going through - please feel free to message me if you need to know anything about what I’ve learnt along the way!! X

[Amywoodx in reply to tig0512]

Hi! Thanks for your advice, good luck for your laproscopy and fingers crossed everything will get better from then onwards, let me know how it goes x