Hi, I'm new here but I was wondering if anyone could help confirm whether they think I'm on the right track by thinking I have endometriosis

[Scarvioletta2411]

I'm a 21-year-old University student in the UK, and I'm currently in the process of getting my symptoms assessed by a GP, but it's going really slowly and I'm getting myself worked up by obsessively searching the internet for advice, so I thought I would turn to a support group such as this.

For the last few years, I've been aware of having short periods of fairly severe pain in the left side of my pelvis and painful bowel movements, where I appeared to be showing signs of constipation despite the fact that my excrement was as soft as it should be. My GP suggested changing my diet to include more fibre and prescribed me with fibre-enhanced vitamins for three appointments in a row over the course of a year, neither of which made any difference to any of my symptoms. I've also had fairly painful periods for as long as I remember, however they've never really affected me for longer than about half an hour at a time up until recently.

Over the last two months, I have been experiencing some severe pelvic pain, bloating, nausea, abdominal and lower back pain and major fatigue which has left me bed-bound for days at a time and incredibly moody, to which I must congratulate my boyfriend for putting up with me with nothing but patience. I've also had much heavier periods, where I've been bleeding for longer and more irregularly for the last few months, and there have been a few weird lumps coming out around the same time and what looks like blood both when I pee and when I poop during my period. About half the time, I'm also having pain during intercourse, which is giving me doubts about whether I can keep my boyfriend completely happy for much longer.

All in all, it's been a couple of rough months and through all of my internet-searching, I have appeared to convince myself that there's something really wrong with me. I've had an ultrasound but it came back clear, and seeing as I'm starting to have doubts about my relationship and my fertility because of this recurring pain, I'm really looking for someone to help validate my suspicions or offer a different direction so I can stop driving myself into an unwanted, obsessive isolation.

Thanks very much in advance everyone,

Scarlett

[Catness]

Hi Scarlett,

Sorry to hear you’ve been having such a tough time. Go back to your GP and demand (in the nicest possible way) to be referred to a specialist endo centre in your area. You can find them on this website: bsge.org.uk/centre/

I’m not a medical professional and wouldn’t feel comfortable saying whether I do or don’t think you have endo. However saying that the symptoms you have listed do ring true for many of the endo symptoms and I personally think you need to see a specialist gynaecologist to discuss some of the issues you are experiencing. In particular pain during sex etc.

When you go to the GP say the reason why you want to be referred is because it’s affecting your mental health as you are very concerned about your fertility, your sexual health and it’s having a very negative effect on your studies. These, while obviously true, are all red flags that the GP *should* take seriously. Try not to let them send you to a general gynaecologist as they may not have the expertise to actually help if it is endo.

I understand how tough it is. My endo story started at 19 and 21 I had my first lap (27 now) but the only way I started getting anywhere was becoming quite pushy and advocating for myself because for some reason many GPs seem reluctant to actually refer endo sufferers.

The other option of course, and the route i eventually took, was to pay to see an endo specialist privately (google private hospitals in your area and then search their websites for consultants and choose one with a high level knowledge of endo). You could also then google the name of that consultant to see if they also work in the NHS. This would be useful as if the consultant suspects you have endo they could possibly re-refer you back into the NHS for treatment but again you will need to speak to them about this as there is no guarantee this will happen. Private consultations cost in the way of £180 and when I went down this route I was seen within 2 weeks and had the diagnostic lap within 8 weeks. The difference is remarkable.

As for not pleasing your boyfriend.. although I do understand this worry... the feminist in me wants to tell you to take care of yourself first. If a bloke got annoyed because sex physically hurts and makes you uncomfortable.. then he’s not the right one. Hopefully you have one of the good ones who is understanding and if so perhaps take him to your gynaecologist appointment so he can understand a little better what’s going on. I did this with mine and he found it very eye opening.

Oh and before I forget I had an internal ultrasound and it came back clear and the NHS pretty much told me to go away. I shortly after had my lap where I was diagnosed with stage 4 endometriosis, adenomyosis and interstitial cystitis. I’m not sure scans are terribly good markers for endometriosis unless you have a little more going on in the way of cysts or fibroids.

I’m also a student doing my MA but even when I was doing my degree I registered as a disabled student and found the uni to be terrifically supportive. Have you considered doing this? It may take some of the stress off as at my uni (Brighton) they wrote me a tailor-made learning support plan which all my tutors had a copy of which gave permission to extend deadlines etc. So it’s somethint to bear in mind. I also applied for Disabled Students Allowance and received a number of assistive technologies such as software that reads documents off screen to me which are a lifesaver when the fatigue is bad. Again this may be helpful for you?

Xxx

[Scarvioletta2411 in reply to Catness]

Hi Catness,

Thank you so much for your quick response. It feels so great to be able to share these symptoms and feel listened to for a change. How is everything going for you now?

I have actually been suggested by my parents to look at private hospitals as they are so much quicker to diagnose conditions than the NHS. My concern would obviously be the money, but I'm at the stage now where I am seriously considering whether it is worth it as the pain has become more than a little disruptive. What was the process like for you? - was it like one or two consultations before they referred you for a laparoscopy or were there multiple scans and/or tests in between?

I haven't thought about applying for a DSA for any of my symptoms at the moment as I didn't think I'd have a metaphorical leg to stand on without any kind of diagnosis. One of the reasons I am feeling so motivated to try to get to the bottom of my issues is that I'm just about to start exams for my 2nd year of university and I'm really struggling to find the energy to even get up in the mornings, let alone work and revise through the constant cycle of pain and nausea, and I wanted to get a diagnosis quickly so that I'd be able to at least think about getting extenuating circumstances for my exams next year if it's looking like the pain will be this bad then as well.

Scarlett

[Catness in reply to Scarvioletta2411]

Hello again,

I can’t speak for everyone but my private consultant was so convinced it was a ‘textbook’ endo case I had one consultation with her and then was put straight forward for a lap. The whole thing probably took place in the space of two months. This maybe because I already had the scan on the NHS which didn’t show anything so perhaps she felt there was no need. Can I ask which part of the country you are in? Xxx

[Sludge78]

Push for an MRI as ultrasounds do not clearly show endo. (Had numerous!).

[Annimay43 in reply to Sludge78]

Hi seen your reply to scarvioletta2411 can an MRI detect Endo? Im waiting on gyane to see me as Dr suspects ive Endo

[RicEndoUK in reply to Annimay43]

Hi Annimay43,

An MRI doesn't always detect endometriosis but in some cases (including mine) it can show deep endometriosis. At the moment, the only way to diagnose endometriosis is through an operation called a laparoscopy. You can read more about diagnosis and laparoscopic surgery here:

endometriosis-uk.org/sites/...

endometriosis-uk.org/sites/...

Hope this helps!

RicEndoUK

Volunteer Moderator

[Annimay43 in reply to RicEndoUK]

Hi

and thanks for replying to me. I had one laparoscopy surgery done last year it was for gallbladder and hoping dont have to get another one but if it is the only option for me to find out for defs then I will