Hey, I feel so thankful that I’ve found this online community. Thank you to everyone who has shared their journey so far. I really admire people’s bravery, vulnerability and willingness to help others.
I’m now 24 years old and I’ve had problems with my periods, bowel movements, bloating and pain for years and years. I’ve been on many different contraceptive pills, tried different diets, and other natural treatments, such as acupuncture but my symptoms have become worse over the years.
I had a laparoscopy done a few years ago through the NHS but I don’t think it was an endometriosis specialist - they didn’t find anything at the time. Previous to that, I got diagnosed with PCOS. In 2021, a private gynecologist suspected I had adenomyosis and also pelvic endometriosis but suggested I waited a few months to see if my symptoms got worse. Again, he didn’t specialise in endometriosis.
At the end of 2021 my symptoms became unbearable, I found it hard to work and the pain associated with my period and bowel movements became debilitating. I was back and forth with my GP but I wasn’t getting anywhere.
A few days ago I saw an endometriosis specialist who I found through the BSGE register. They carried out the internal ultrasounds and said they couldn’t see any deep infiltrating endometriosis and confirmed I didn’t have adenomyosis, however I’m having another laparoscopy in a month to check for superficial endometriosis.
Although I’m very grateful they didn’t find deep infiltrating endometriosis, or adenomyosis, I’m worried they won’t find anything at all when they carry out the laparoscopy. It’s a weird feeling to describe and it’s making me feel very anxious. I don’t necessarily want to have superficial endometriosis either but I’m worried that if they don’t find anything at all, I’m back at square one and I won’t know what’s causing this array of symptoms.
Some days are worse than others with regards to symptoms, and on the days where I feel like I can actually manage them and get out the house, I get these overwhelming thoughts that I’ve either imagined the pain in the past or that because I’m so anxious, my anxiety is somehow creating these pains in my body, and that it’s not endometriosis at all. I’m worried it’s all in my head.
I’m finding it hard to articulate how I feel and I don’t feel like my friends or family can relate, even if they want to or have tried.
Has anybody else experienced this before? Or had similar thoughts/feelings?
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simplerthings
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Hi there, I can completely relate to exactly how you're feeling. I'm sure most women here can! It's hard to describe to people who haven't been through it. You've spent so long needing a diagnosis and you're sure of what you have, and you just need to hear it. The fear of not finding anything on my lap consumed me, it was all I could think about. My life was on pause, and I needed my pain be validated to me and everyone I know. It seems wrong to wish for a particular diagnosis, like you want there to be something wrong with you, but the symptoms are there and you can move forward until you know why.
I got my diagnosis even though 2 gynaes thought I didn't have endo. My life is still on pause waiting for treatment, but mentally I feel so much better knowing I can plan a way forward and I'm not going crazy!
Don't let those feelings of anxiety and self doubt creep in, none of this is in your head. You will get your answers eventually. My ultrasounds looked completely normal but my lap found endo in various areas, including significant adhesions between my uterus and bladder, so don't let that discourage you x
Thank you so much for your reply, it’s comforting to hear people have had similar experiences and feelings. Can I ask if they found superficial endometriosis when they carried out your laparoscopy? I hope you get the treatment you deserve and you find the support you need to help manage your symptoms. All the best x
Hi there, sorry for my delayed reply and thank you for your kind words. I hope endo is treating you well at the minute!
Yes, apparently most of my endo is superficial and only a small amount is deep infiltrating.
I have since had another transvaginal ultrasound a month after my lap, and there is an endometrial cyst on each of my ovaries, which weren't there before on ultrasounds only 6 months before and one of which wasn't seen by my lap surgeon 4 weeks prior! It goes to show that things aren't always as simple as they seem x
I'm sorry you are feeling so upset and anxious.Itis terrible to be in constant pain and to have no explanation of why, becuase without understanding why you have the pain there are no steps to take to stop it. It is extremely upsetting when your suffering and pain are invalidated by medical professionals too, I can't understand why they think people are making up their symptoms......
Having said that though you seem to be thinking about your problems in an unusual way. I have adenomysiosis,terrible stage 4 endo,a frozen pelvis etc and I would be ecstatic if I had a scan or laparoscopy that said I didn't have it. Even if you get a diagnosis for these condiitions the endo is so difficult to get rid of it is close to incurable. If you get a second laparoscopy and they find nothing then you can rule endo out and try to find out what is causing your pain.You should be very happy if it is ruled out.
If they do find endo then you can take steps to egt rid of it especially if it is not very deep or advanced in it's spread.
I don't think you should be feeling disappointed you don't have these conditions, you should be over the moon. But I totally understand that if you are still having very bad pain and unable to find out why that is a serious problem.I understand how horrible this is because I was in a very similar position for years.Perhaps you need to investigate in a different direction if the lap is negative. There are other conditions that can cause lots of pain in the abdomen. I have no idea of your symptoms but perhaps you should consider that they are being caused by something else.
For example gallstones can cause terrible pain, stomach ulcers, PID, problems with kidneys, intestinal problems. Maybe looking at what could cause your pain with your doctor you could make a list and try to rule causes out by process of elimination.
The important thing is to not give up, don't let anyone make you feel that it is all in your head. When someone has terrible pain long term it is for a reason and it is quite right to try to find the cause and put a stop to it. But don't get fixated that it must be endo, it could be something else like gallstones etc which is so much more easily cured.
Anxiety can't create pain in your body but it can be really debilitating and it is an illness in itself. I had never suffered from it until all this stress with covid and now I do. Perhaps you could try to find something online or a good self help book to help you with this as it sounds to me as if you are really struggling with it and it is making the situation worse.
Try to stay calm, be thankful you are able to get the lap, if they find no endo etc be glad you dont have it. If they do find it be glad you can try to tackle it.
If they don't have it go back to the doctor or check online what your symptoms could be and get the checks you need for those possibilities. Just take everything one step at a time. I. really hope you solve your mystery soon. Good luck.
Wow, theres some slight differences in details but I almost felt like I was reading my own post here. I feel exactly the same as you do! I'm really worried that I would put my family through all the trouble of traveling to get my laparoscopy done by a good doctor, and turn out nothing is there. Even with my gastroenterologist saying she thinks its endo, I'm just so worried I'll be wrong. The anxiety before every appointment that tests will come back negative and the relief when one finally shows up even slightly abnormal! I've been feeling progressively sick for years now and had so many symptoms I think I just overwhelmed most doctors. I had other complications going on and didn't know which symptoms belonged to what, I was just one big debilitating mess. Now that I got a few more pieces to the puzzle and some treatment I've been able to see what is causing which symptoms a little clearer but not much.
I don't think your thinking is unusual at all. I know how it feels to desperately want some answers. Even if you can't fix the pain, just to be able to put a name to it so you can explain what you are struggling with to other people. It feels like people don't realize the depth of your pain without that named disease to give them. You feel like no one believes you.
My emotional condition going through all this was so bad (which I know realize was largely due to my hormones being way off because now that I'm on the pill I finally stopped crying uncontrollably) it made it that much worse to talk to rude and ignorant doctors that made it out to be all in my head. I'm still quite traumatized from some of those incidents that I'm very anxious before my doctors appointments even with doctors I know are nice-- which btw I finally met some doctors with beautiful hearts who's kindness helped me to keep trying to find answers when I was ready to give up. My family members were even with me on those bad appointments and were appalled at the way I was treated, so I know that I wasn't just being sensitive, I know that they were wrong but it doesn't help my self doubt.
I know its so hard to keep trying when you are thrown back and forth between doctors and end up with zero answers! You have to search to find a good doctor, but its worth it to find one that really cares and is willing to keep pushing forward with you 💕
I feel the same way when I have a good day. It feels almost like some sort of forgetfulness where when I'm feeling good, in a way I don't remember how bad I was feeling before and all these anxieties and doubts come rushing in. I was bed ridden for over a year and still felt this way at times. But it was actually much worse before my symptoms came to head because I just felt like I was lazy and assumed everyone else has it this bad too but they keep moving on with life. But that's not right. Even on days where you don't feel pain, if you are laying in bed all day without anything occupying you and not even be bored because you just feel unwell, not able to do any of the things you need to do, like even a load of laundry, thats not normal. That might be more specifically me 🙃 but the point is being sick isn't lazy or faking it.
I rambled on a lot, sorry for the long message. Hopefully something I said helps a little though 💕
I totally understand and I hope you find reassurance to the source of your pain 💕 I'd love hear how things work out for you too
Hey, thank you so much for your reply and please don’t apologise for rambling - everything you said was very insightful and comforting. I’m sorry to hear about your struggles and I really hope you find some answers too. It really is a stressful process. I have the same worries with regards to my family. I’ve mostly gone through the NHS but recently my family have offered to pay for private health care. I feel very grateful that they want to help me out and that I have their support but it’s a lot of money for them to spend, and as you said, I’m worried that if they don’t find anything in the laparoscopy I’ll of wasted my family’s money and time.
Do you have a date for your laparoscopy? What are your symptoms if you don’t mind me asking?
Thank you again for your kind words, I really appreciate it. Keep me updated with your journey too. Wishing you all the best ❤️
No, no date set yet. The doctor I'm looking at, I have to wait until March 1 just to try and schedule an consult with for July or something. My symptoms are a long story, I can DM you later if want.
But in short, lower abdominal pain and cramping every day, mild to severe painful inflammation and bloating, painful trapped gas, sharp knife like pains shooting from my pelvis/bum and through my stomach, gastric issues (way too much gas and burping, nausea) and apparently my gallbladder isn't functioning well (I don't know if thats a symptom related or separate), my symptoms are worsened when I stand for too long/use my abdominal muscles, fatigue. I was a lot worse before I went on the pill 10/10 pain on my period, 12/10 stabbing pains around ovulation, and too sick to function all month.
I really hope you are able to make progress with regards to seeing the consultant - hang on in there. Sorry to hear about all the symptoms, a lot of them sound quite similar to mine. I also got put on the pill two years ago which alleviated some of the pain, as my periods used to be really heavy and really painful. It’s helped a bit.
If you’re comfortable DM’ing me later that would be really appreciated. No pressure though. I’m just intrigued to see how the symptoms manifest in different people, and as you said our stories have a lot of similarities. I’d like to hear how you experienced your symptoms through childhood and adolescence. Have a lovely day and thank you again.
I can too relate to your post. The process to understanding endo and the affects it has on our body is really hard in itself. In my experience getting a doctor to understand it is harder still. I think that what you are experiencing in terms of your anxiety about them not finding anything is a very valid response to the difficult journey you have been on so far. You are the expert when it comes to your own body, I hope that you get some answers for the pain you have been experiencing.
Thank you so much for your reply. It can be difficult to deal with sometimes due to the amount of personal research you have to do because of conflicting messages you receive from doctors and medical professionals. It brings about a lot of confusion. I feel lucky that I met with an endometriosis specialist last week who I found through the BSGE. I know that the laparoscopy he carries out will be done properly. Have you had a diagnosis? Thank you again for your message and I hope you’re getting the treatment you deserve.
Hiya, thanks for your message. You are absolutely right in regards to conflicting messages from medical professionals and the confusion that causes. I am at a similar stage to you where I have been teetering on having a laparoscopy but worried about them not finding the endo. In part my worries also stem from not trusting in the professionals I have seen as they are not specialised in endo and I really haven’t had the best experiences . So I am happy to read that you have found a specialist you can trust. I have been looking into going privately but again that throws up concerns of whether I can allow family members to help me pay for a procedure that may not result in the diagnosis I am so sure of. I think for me a lot of my reluctance to have the procedure comes from me struggling with acceptance of how my life has been affected by pain and complications. But that’s something I’m working on. Wishing you all the best on your journey going forward.
I 100% understand you. I had a lap that showed nothing. Continued with symptoms that just got worse over the years. Nothing showed on ultrasounds. I saw a endo specialist privately who thought I had it. Paying all that money for a laparoscopy, desperate for answers and terrified they wouldn't find anything was very stressful. In my case he found deep endo in my us ligaments. I assume on the original lap years early they either didn't look beyond my ovaries and womb or didn't recognise what they saw. He also told me that endo can be smaller when you are younger. I can't promise you what the results will be but you are right to keep seeking help. I know the relief of sitting in my bed coming round thinking 'they found something, they found something!' I really hope you get the answers you need to.
Thank you so much for your message, I really appreciate it. I’m sorry it took you so long to gain clarity on your situation. It’s ironic isn’t it, that people feel somehow relieved when they finally get diagnosed with a life long chronic illness but I guess that says a lot about the diagnosis process. My laparoscopy is in three weeks, so hopefully I’ll have some answers by then. All the best.
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