Hi everyone! I've been part of this group for a month or so with a huge suspicion that I have endo. Sorry if a similar post has been posted and answered! After months of fighting the healthcare to try and find out what's causing me debilitating chronic pelvic and sciatic pain, a gynaecologist today said she definitely thinks I have endo. I literally cried in her office because it was just so relieving to hear since NO ONE else I've seen has mentioned it (and one GP literally told me it's "definitely not" endo).
So anyway, a little backstory: I've desperately needed a pelvis MRI scan because sciatic pain has been my main and first significant symptom for the past 2 years ever since I was 14 weeks pregnant in 2018 (I ended up extremely crippled with crutches throughout the rest of my pregnancy and it was diagnosed as pelvic girdle pain). I've had a lumbar spine MRI scan in late 2019 when the pain randomly came back in extremeee measures about 4 months postpartum and the scan came back clear (shock!) and had no follow up of what could be causing my sciatic problem - and I'm sure a lot of you can imagine how insane that made me feel because this was before I even knew about endo and then started to put the two together after Googling the sh*t out of my symptoms (typical debilitating endo symptoms started to appear late last year on top of my sciatic problem).
Hopefully this is all making sense, haha! Anyway, so my gyno told me that the first step is for me to take the combined pill every day for 3-4 months before they decide to investigate further with a pelvis MRI scan and/or a laparoscopy which is super frustrating in my opinion because how the hell does the combined pill actually diagnose/confirm anything, lmao? Apparently they can't refer me for a pelvic scan for some reason when I asked because they want to see if the combined pill will help my pain first as if getting a referral for a scan is impossible until AFTER the 3-4 months of taking them, lmao. I personally DO NOT CARE if the pills help with my pain because I want someone to physically take a look inside me, not tell me to stash hormones down my throat because why would you NOT want a proper good internal look via scan at least?
So my question is: has anyone been in a similar position and what did you do? Did you wait on the NHS to refer you for a pelvis MRI or have you taken matters into your own hands (and bank!) and got a private scan? If you got a private scan, where did you go etc? I don't think I can wait 3-4 months to then see if someone will actually HELP investigate the level of endo is in my body and WHERE it is too. I have a 1 year old daughter to look after and for most of the month I'm bedbound and feel ridiculously useless as a mother most times and am super concerned if the endo has grown on/near my sciatic nerve because it can cause irreversible nerve damage!
I hope all of that makes sense! Thanks in advance to anyone that replies!
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Hey - so sorry to hear about your horrid symptoms !
I’ve just decided to go private .
Basically I have been diagnosed with Endo previously when I was in my early 20’s , however it took years to diagnose it . I was fobbed off by Drs and gynae consultants until I was lucky enough to have a GP with an interest in Endo who referred me for an ultrasound (which didn’t show anything ). My GP stated that she felt that the scan wouldn’t necessarily show any Endo and so referred me recommending a Lap. The gynae consultant obliged and I had a lap and was diagnosed with endo on my ovaries ... I think ( It was 10 years or so ago ).
Mid to late last year everything pain wise starts getting worse including periods . Then I started getting ovarian pain - went to a new GP (as I’ve moved ) . Referred for an MRI and it shows a small cyst on my ovary . I’ve also been told it showed my bladder isn’t emptying properly . I’ve also got blood in my urine aswell . I got an NHS referral to a general gynae . In the meantime I’m in horrendous pain and having time off work . I can’t do my job properly and am basically concealing my pain as best I can , when I can get into work .I went back to GPs who have just given me pain killers and told they were going to try and speed the referral up . However upon chasing up - I’ve been told my GP surgery have said it’s too difficult to get through to the gynae department on the phone. So I’m still waiting .
After much thought and research b I’ve decided to go to a very well thought of endo excision specialist ( well thought of on here and from friends and relatives ). I’ve decided to pay privately as I can’t cope and I don’t think the NHS is equipped to quickly deal with my issues . I go next week (I’ve had a 7 day wait for the appointment ). I I can’t stand the thought of this carrying on and I’m hoping to have a LAp so the consultant can advise / treat me .
So basically a very long winded way of saying - I’d go for it . It’s your health, it’s worth it . At the very least a consultation . I believe they can then refer you to their NHS waiting list . Hope that makes sense .
Hello! Aw thank you so so much for your reply and I'm so sorry to hear about your experience and symptoms! It's so awful how much it can affect your life, especially work! Your response has made me feel less alone in some sense and also better going towards private care - even just for a consulation like you said.
Thank you again and wishing you all the best with your appointment next week - I hope it's a huge step towards a better quality of life for you!
You too ! You deserve to be taken seriously ! It’s just such a shame you have to pay for it . Hopefully one day soon it won’t take years of pain , women suffering ,land being fobbed off before a diagnosis is given . Wishing you all the best ! Get well soon x
Ps. I can’t see that a private consultant will stick you on hormonal treatment prior to a Lap , as once you have Endo causing you such pain it won’t get better . It needs to be excised.Plus , they don’t have to worry about costs when it comes to treatment like NHS - as you’re paying .
Go private. By the time the NHS would have seen me for my assessment, I was already out of theater and waiting to go back to my hospital room. In fact the assessment would have been on the same day as my laparoscopy.
I don't think community guidelines would allow me to say where I went for my scan but pm me if you want details.
Another one for private, but to reassure you some do payment plans, you can spread costs over 4/5 years. This was a game changer for me as I do t have the money to hand, but can find the monthly payments. Xx
My mri showed zero, in the Lap they removed deep infiltrating endo nodules from my bowel and bladder, apparently they were producing their own oestrogen, so no pill would have helped. I am in visanne now and my pain is a lot less and very little hormone problems, sadly only available overseas but I’m trying to get that changed now xx big hugs
Also my friend went private and she has to go back now for a 2nd op because the surgeon wasn’t trained to do the removal. On nhs my doc was trained under one of the best endo surgeons so I had one lap, everything removed from bladder and bowel, he was wonderful. I wish the same for you so first look up your docs name, check reviews and his training xx
Omg your story is my story. I've had severe sciatica, hippain, lower back pain and piriformis syndrome for 3 years now. They found bilateral endometriomas on a spinal mri by accident. Since I'm in so much pain. I was diagnosed last month with severe endo and kissing ovaries via mri and ultrasound. I had a new mri. No lap yet. Cysts are rather large. Im Dutch and live in the Netherlands so I don't know about the NHS. But I've lived in the UK many years ago. I also asked my gyno the same question. Is it around the sciatic nerve. She said they didn't see it on mri. So it isn't there. I don't believe this. Mris are only good for seeing cysts and very deep endo.
So I went for a 2nd opinion. This gyno saw deep endo on my bowel during ultrasound. That really scared me. The first one didn't see this. And she also said my bowel is adhered to the back of my uterus. I also have IBS since I was 13. I've always had horrible periods. But always regular. When I got off the depo shot in 2012 it took a year to. Get my period back and it came back with a vengeance. I saw a gyno for this in 2015 cause I suspected endo. She did ultrasound and said I don't have endo. But offcourse I did. She was wrong and oblivious. They just told me my whole life I was being sensitive. Even had a doctor tell me my sciatic pains and lower back pains were all in my head. I feel my gyno acts like that as well. Cause she relies on the mri way too much. I'm very sure that once a lap is done they'll find sciatic endo. And if they don't find that im sure the large cysts are giving me the excruciating pains. My anatomy is messed up! My ovaries are stuck together. What else is messed up?!
I'm 36, no gyno was able to answer my questions about fertility and risks of surgery. Will I keep my ovaries, will I be able to become pregnant.. They both said.. It depends.. It depends. Yeah on freaking what?!
I too have been crippled time to time. I lost my job due to the sciatica. I get really bad muscle spasms as well that make me move to the floor. I've seen a pain specialist who thinks it has something to do with the cysts. So he said I have to figure things out with my gyno. But she isn't convinced my sciatic pains are endo. Uhhh hasn't she read how COMMON sciatica is in endo sufferers?!
I wasn't relieved at all when I got my diagnosis. Cause it's not really a diagnosis until they do a lap. And for some reason theyre withholding this lap. Maybe because I'm all out of shape cause I've been unable to move because of sciatica, maybe because I still want to be fertile and they don't know what to do.. Why oh why are we 6 months along and nothing has been done! No treatment plan, no hormones. Nothing. I emailed my gyno for hormonal therapy. I hate hormones. But I don't want these cysts to grow. I feel so overwhelmed.
I can Inmagine how you must feel. With your child and having to take care of your child. You want to be a fit mommy. And nerve pains are the worst. I've had nerve blocks, they helped the leg pain for a few months. But not the sciatica in my lower back. It's ruining my life. Completely.
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xx 
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