Hi everyone I’m new to this forum and looking for some advice 
I’ve been battling for years now trying to get some answers. I’ve suffered with very painful and heavy periods since I first started when I was 11 which were eased slightly when I went on the pill at 16. I’m now 26 and the past few years my periods have been getting worse again and I’ve been having a lot of tummy trouble as well. Upset tum / stomach pains / sever bloating where I look pregnant. I’ve had blood tests and food allergy tests and they were all negative, my consultant keeps saying she thinks I have IBS, even though the symptoms seem to flair up around ovulation / during my period. She’s put me on mefanamic acid and told me to take my pill back to back for the period pains which isn’t really helping, and keeps telling me that I don’t have endometriosis when I’ve asked her if it’s a possibility. She says my symptoms don’t point to endo, because I only have painful sex sometimes and not all of the time, and I have never collapsed or been sick due to the pain (even though I’m popping painkillers like sweets glued to a heat bag apparently this is normal?) During an ultrasound they discovered cysts on both ovaries but have put that down to PCOS and left it at that. Do you think it could be endo and I should push for a second opinion? Thanks very much in advance x
Undiagnosed Endo? : Hi everyone I’m new to... - Endometriosis UK
Undiagnosed Endo?
100% would push for a second opinion, I have endo and sex is painful sometimes - not always. Everyone’s experiences of it are different, I was told my period pain was hormonal for ages but kept pushing, just ask (and don’t give up asking) for a gynaecologist referral, it’s a 100% worth it x
Thank you, yeah the more you keep getting told that what you’re experiencing is normal the more you start to believe it yourself! I will go back and ask for a second opinion x
Defo for for a second opinion, no matter how soul destroying it is. I had a negative lap and was basically given up on by the NHS and ended up forking out to go private but it was definitely worth it, she gave me some advice and told me she's convinced it's endo, and even told me what I could use to help thats not hormones as I told her I didn't want to go back on them. Even if it's just a consultation, a private or BSGE gynae is a good shout and will probably make you feel a little more confident about where to go next x
Thank you for the advice, it’s so frustrating and you start to doubt your symptoms. I will ask for a second opinion and look into getting a private consultation if I have no luck x
Definitely change GP or pay privately to see a gynae x
keep at them ..... if i had more info 20 years ago I might of been diagnosed then and not suffered so much ... I have a 24 year old daughter who suffers with so many symptoms of endo and is struggling to get diagnosed.... she is now trying to get seen by my consultant who is at a different hosp to mine ... so please keep badgering them and don't take no for an answer ☺good luck x
Thank you for your reply, I’m sorry to hear that it took you so long to get your diagnosis. I hope your daughter gets sorted soon with some answers as well x
Hi there,
Definitely try to get a second opinion if you can. Responses I've had from doctors over the years have run the gamut from 'you almost certainly don't have endo' to 'you almost certainly do have endo'. Pain with sex is now and then for me too, and I've been told this is THE definitive symptom, or not relevant at all. I wish it didn't depend so much on who you talk to.
In any case, pain needs to be taken seriously. We need to keep pushing until we find a Dr who takes it as seriously as we know it is. All the best x
Hi thanks for replying I know it’s ridiculous isn’t it, one (male) Dr actually laughed when I asked him if it could be endo, which made me feel silly for even asking! I’m going to push for a second opinion defo x
Keep at it. I feel like I just read a younger me through your post. Despite having fibroids and cysts discovered 10+ years ago, having private scans, and seeing several different gynaecologists, it's only now that I am being listened to. Don't give up putting pressure.
In the meantime, look at what you can change in your diet because that has a significant impact on your hormonal balance. Changing my diet is the only thing that helped me to have some sort of normality.
Thank you for sharing your story with me, it’s really helping me mentally to know I’m not alone because this journey has been so hard not knowing what is going on. May I ask what your diet consists of? I’m currently trying gluten free and dairy free but have only tried it on and off for a few months at a time. My DR recommended low FODMAP as well but having tried this yet x
I have no idea what FODMAP is so you will have to excuse my ignorance. Over the years through trial and error I have reduced the amount of pure soy, wheat, Gluten and dairy in my diet. I also eat less meat by replacing it with fish and pulses. I don't have a set diet per say but I have slowly replaced certain types of food with others. I generally try to eat fresh and organic where possible.
It's not easy and I have been branded a wierd by my family but when they find out why and they see the difference it makes to my body they soon understand.
It’s okay I didn’t know until I googled it after my DR mentioned it! In a nutshell it’s an elimination diet where you reintroduce food types gradually after cutting them out to see what’s causing the issues...she is really convinced it’s only IBS despite my period pains etc. Thank you for the advice, it’s can be hard for others to understand can’t it when you cut certain foods out especially at social events, but if it helps it’s defo worth it x
Hi,
I agree with the above comments, especially about seeing another GP - even if it's only another one in the same practice. Also there are things that can be done. Plus, ultrasounds do not show endo … while ignoring the cysts doesn't sound good to me.
If necessary then, yes: change GP or pay to go private … even if just for the diagnosis. I saw a local Gynae privately and he arranged for an NHS mirena insertion, which worked for me - although it's not for everyone.
PS Is the 'Dartmouth' ref to the Devon town? If so, we have a good 'Endo UK' support group who meet in Totnes. Private Message me if you want to.
Cheers, Gritty.
Hey Gritty after my ultra sound last year the Dr at the time told me I had polycystic ovaries and when I questioned endo he said no...it was only after reading up on it I realised endo can only be diagnosed via a laparoscopy! The consultant I’m seeing at the moment keeps recommending the Mirena coil which I feel unsure about but willing to try anything to stop my current symptoms. How long have you had that for? Yes it is! Sadly I do not live in Dartmouth I am from the midlands but it is one of my favourite places where I try to visit as much as I can, but thank you very for for the suggestion x
Hi Dartmouth,
I'm older and no longer have a coil: post-menopause - I had it removed a yearago, after about 6 years. All tests then indicated I was through the menopause. (Normally, they are removed / changed after 5 years.). The private gynae consultant suggested mirena - I was in my early 50s - as I was in such pain: yet this was only a year after a lap, which had removed a lot of general endo (but with no signs of any of the nastier forms of endo tissue, nor endo in the more dangerous areas). As well as cutting the pain, he also felt t the coil would probably see me safely through the menopause - which is what happened.
The mirena releases only progesterone, which counters excess oestrogen which may cause the endo. Also, the mirena is safer: because it is placed in the area where the progesterone needs to be acting, the dose of progesterone that is released is smaller, and is not coursing all through the body - as happens with pills and patches.
The hard part is the insertion. Some women (maybe had several children?) don't find a manual insertion while conscious too painful, and can have the mirena fitted at a local surgery. However, as I was in my 50s, had not had children, and the consultant thought my cervix looked narrow, he arranged for me to go NHS, and have it fitted during the day, under anaesthetic - which was good as they also had a general look around. I was fine after; the first periods were less and less painful, and eventually they disappeared completely, and I was fine for about 6 years, when tests showed all hormones were at post-menopause levels, and I had the mirena removed. It's not for every woman, and I also don't know if it is appropriate with polycystic ovaries, but it did work for me.
NB There may be a good 'Endo UK' support group near you in the Midlands. Endo UK can be a bit stuffy (eg. on here, occasionally), but the women who run the groups are ordinary locals who have done the 'Endo UK' training course. If you can find a local group it's worth going, as the women members will know about good and bad local Drs and clinics.
Also: I don't live in Dartmouth but it's one of the nearby towns. I do love it here, but it is a bit quiet ... parochial … and we have to trek to Exeter, Plymouth or Bristol for really good theatre, music, shopping etc. which I'm a bit loth to do as we are trying to watch our carbon footprint. But, I'm originally from the Midlands: Stoke-on-Trent!
Hope this helps, take care.
Gritty
Ah I see thank you so much for sharing your story I’m currently having a read up on the Mirena trying to decide what to do so we shall see! I’m really glad it worked for you. I’m also from Stoke-on-Trent! I’ll have to have a look and see if there are any local groups. All the best x
This is literally exactly the same as my story except I have firmly refused to take the pill again because my mood was so horrendous when i take it. But I finally found a GP who listened to me and referred me and I’m booked in for my lap in January? I don’t know how people are treated so differently by different GP’s?!
If you feel that something is wrong then keep pestering, keep going back. Request different opinions, read up on it as much as you can and take someone with you if you can.
My gynae told me that my scan was inconclusive on my ovaries so referred me for a second one and that my bloods indicated borderline PCOS. The GP told me I definitely had multiple cysts and my bloods were normal? So they can definitely get it wrong!! Trust your gut instinct x
Hi there, it took me years to find a pill which suited me but now my consultant is trying to get me to have the coil, which I’m skeptical about because I don’t want my moods to be affected. I’m also taking antidepressants and have been for a few years which has taken a while for me to feel balanced, so I’m worried changing my hormones will mess everything up! It’s so difficult. Thank you so much for all of your advice, my bloods came back normal but the ultrasound showed cysts on both ovaries so it’s a constant battle of not knowing what’s going on! I will defo push for a second opinion x
You have to prioritise your mental health as well, it’s all about finding what you’re comfortable with. Do your research on everything you can. Regardless of how horrible the symptoms can be, it’s liberating and empowering to have the knowledge to do what’s best for yourself and your own health. I hope you find the answers you deserve x
Defo it’s difficult but important to find the right balance. I’m really finding this page helpful reading other people’s experiences with it as it has made me realise no two women are the same with their experiences with it. Thank you for your kind words x
Yup, sounds like endo 100%. I would immediately book an appointment with an experienced endo excision surgeon. Please PM me if you want names of extremely skilled surgeons working within the NHS.
Thank you so much x
Definitely! You need a second opinion! What she is saying is rubbish imo. I have endo, and I get the type which causes very heavy bleeding and some pain but not the type of passing out pain other women get. That’s what put me off seeking treatment for so many years, when in fact I do have it. Finally had treatment at last! I’m 47.
Thank you that’s made me feel so much better. You start to doubt yourself don’t you and think that even though it’s really bad, because the pain isn’t excruciating passing out type pain, that you’re over reacting. For years I took standard painkillers and they did nothing and it was only when my ex who was a pharmacist recommended naproxen, that I tried something different. At first they offered some pain relief, but now only take the edge off for about an hour, and mefanamic acid is the same also. I do hope you’ve found some relief since having your treatment x
Oh yes I find Naproxen helps a bit, or I take Mefalamic acid with Tranexamic acid to help with pain and to slow bleeding. I often top up with cocodamol though. The surgery was last week but I’m hopeful it will help with the bleeding - as time goes on I’ll find out! Fingers crossed! X
Thank you everyone so much for responding to my post. I found out today that my grandma, and both of my aunties (on my Dad’s side of the family) all had to have a hysterectomy when they were in their 30s / 40s due to bad periods...endo wasn’t diagnosed I don’t think but could it be possible that endo runs in the family making it more likely I have it? X
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