Left groin pulse pain (please help!) - Endometriosis UK

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Left groin pulse pain (please help!)

Telli686
Telli686

Hi ladies,

Does anyone else have this sort of pulse like pain in their left groin-ovary area in the week of ovulation? It is just getting worse and I'm getting very worried! I am booked in for a gyno appointment finally I was referred, but its not till October and I've already had two clear ultrasounds and an MRI showing nothing, I know a lap is the best but I need to be referred again first and I'm doubting they'll do it, I backed out before as they gave me a general surgeon and I want a specialist so am starting the process all over again :(

I know nothing is showing up on tests, but with all my symptoms for over 10 years (Theres a double A4 page worth!) and this excruciating pain, I'm worried especially about my left ovary and future fertility and am crying myself to sleep with fear.

Any advice?

Thank you lovelies xxx

9 Replies
oldestnewest

Hi there, not sure if I can be of much help but your post rang some bells with me so thought I'd comment, just in case! I think I know what you mean when you say 'pulse-like' pain. When I had my severe endometriosis first diagnosed, predominantly on my left side, on the pelvic wall/uterosacral ligament/left ureter & left ovary (which were all stuck together) I noticed a distinct "pulsing" feeling, not always at ovulation but often then and also at other times when I felt my endo was laring up. Only after surgery to address the adhesions did I see some improvement in this pulsing feeling.

The surgeon thought it may be because my ureter was very badly swollen/distended and partially blocked by a nodule of deeply infiltrating endometriosis, as well as significant adhesions which were basically strangling the ureter and almost closing it shut. So, whenever urine was trying to pass down the ureter from kidney to bladder, I felt the pulsing action of it trying to push through, if that makes sense? Usually this pulsing action of the ureters won't be felt, but because mine was so badly damaged I think i noticed it more. Now it may not have been that which was ultimately responsible, but I certainly noticed that feeling lessen after surgery, I also feel the uterosacral ligaments may have caused an issue too but it made more sense to me about the ureter blocking but it's only a guess. I certainly don't want to add more worry on your shoulders as it may be something entirely different, but I just wanted to mention my experience. My early ultrasounds were clear and I stopped having them, however, I didn't have an MRI but went straight to a diagnostic laparoscopy (this was in Australia and they remove endo at the same time as first diagnosing you as it's all private surgery). I think an MRI would have clearly shown everything as the damage was pretty severe. I would also not rely on clear MRI or ultrasounds to mean everything is AOK as sometimes endo cannot be seen that way. I would really push to get a lap done as something sounds like it's going on.You were absolutely right to back out before when they offered you a general surgeon, very wise move my love. If ureter involvement is suspected, then it would be good practice to have a urologist present as well as an experienced endometriosis surgery. I know it's so incredibly frustrating, and I send you my heartfelt sympathies as you're obviously quite rightly very upset.

I took a long time to get diagnosed and my initial lap/diagnosis was done by an average endo surgeon which I'll always regret, but then I did a huge amount of research to find the best surgeon I could for my subsequent surgeries and while it took more time, it was certainly worth it to find the right people I could trust.

Just because things don't show up on tests, please don't just rely on that. I was undiagnosed for 15yrs because my blood tests always showed "normal" and no GP took my pain seriously to investigate my symptoms further unfortunately. I regret every day I didn't speak up more and demand I was taken seriously.

Could you consider private surgery for a laparoscopy? I really feel for you, I chose to fund all my surgery privately and it's costs me thousands but I knew my health would have been severely compromised had I just gone through general surgeons or waited on the NHS, and I had to see endo specialists.

Please trust your gut lovely, without worrying you, I feel in my humble opinion that something is going on which needs investigating. Mine was left far too late, GPs made me believe all my pain was simply in my head and I eventually stopped going to the doctor as I started to think I was imagining all my pain, and the damage done was very significant and very sadly I wasn't able to have a baby because of it ( I tried from age 38-44 but too much damage had been done and I have adenomyosis too so am screwed!) You're doing the right thing love, take control, trust your gut and fight to get the answers you rightly deserve. If I can help with anything further, please do let me know, I know it is a scary journey. I had pioneering surgery 2 years ago and endo is beginning to creep back in other places, I know how scary it can be.

Hope that has helped a bit, try and get some more help and advice and trust your instincts. Sorry for the long reply! All the very best to you and I hope you're not feeling so upset now. It is a very scary time but you sound incredibly sensible and you'll get there and get the help you need. Don't you worry. x x

Telli686
Telli686
in reply to Sez73

Wow thank you so much for your reply, I very much think this could be what's happening as I at the same time as the pulsing pain have bladder issues, but not when I don't have the pain. It's almost a feeling of desperately needing to pee but when I go I'm not needing to at all, so the idea that perhaps my ureter is constricted by endo in some way would make so much sense! I will mention this idea in my next consultation. Thank you, I just felt a horrid gut feeling that the surgery wasn't going to show anything because they wouldn't know what to look for, the idea of surgery is huge anyway, and to not have a specialist seemed horrifying to me! I went private twice for consultations just to get expert opinions however the op would be far out of my price range unfortunately without the NHS. I am hoping to try and get referred to a BSGE centre here in the U.K. So I can have a urologist, gastroenterologist and gynaecologist all teamed up for my surgery... fingers crossed! That's my next battle, fighting for a referral! Every symptom I add to my list just makes that gut feeling about having endo bigger and bigger, and if my gut feeling would just transfer into the doctor's brain even for a second I would be happy! I can only send you all my love and can only imagine the pain you have been through also, far worse than my own. I will keep fighting for answers not only for me but for every single girl who's ever been told "it's just period pain!" Thank you so much again I wish you all the best!! Xxx

Sez73
Sez73
in reply to Telli686

Sorry for late reply. Thanks for your comments. While I can't say for definite, I am suspicious of your symptoms maybe being similar to mine re the ureter issues I had. Especially when you mentioned bladder and kidney issues especially, that feeling of thinking you really need to pee but then not really needing to is very reminiscent of my symptoms when the ureter problems were at their worst, however, as you know with endo, it could still be a number of things, but I guess it's at least something to ask your surgeon about when you see him. I also found it very sore to pee when around ovulation or period time due to the inflammation. When they did discover my ureter was practically being strangled by endo, they saw there was a backwash of toxins into my kidney which was making me feel almost poisoned, so I do think you have every right to get in to see a specialist soon.

I haven't noticed the pulsing feeling since I had my first excision surgery where they excised all the endo off the ureters, but the deeply infiltrating endo did damage my ureters and I know things are still not 100%. One thing is is that if there is ureter involvement, I would suspect you should really go to a BSGE centre as they'll no doubt need to be a urologist present at your surgery. I went privately and had an exceptionally talented surgeon who addressed bowel and ureter issues, however, that is not the norm, and the BSGE centres are the best in offering a multi disciplinary approach within your surgery. Most GPs I've found don't have a clue about endo, I've funded all my surgery so far privately and didn't even need referral letters, however, I've just moved back from Australia and asked my GP for a referral to my nearest BSGE centre, I basically got a GP phone appointment, started talking in detail about endometriosis and he couldn't get off the phone quick enough, referral letter I needed was in the post to me next day! I think you just need to be firm, at the very least you'll be referred to the general gynae department and if they have a sniff that you may have ureter issues, I think they'd refer you to their specialist endometriosis clinic. I really hope you get your referral and some answers soon, whether it sounds whether I've had a worse run than not, it doesn't matter, as you quite rightly said it's about us all keeping finding answers and trying to get this disease more understood and recognised in the wider domain.

And as for comments like "Don't worry, it's ok if there is a problem with your left ovary because you have 2!" I give up! You're absolutely right that doctors can make this so much worse. I went through all my old doctors notes and was so sad seeing that I'd gone in practically once a month every time complaining of the same back ache/leg pain/pain when I sneezed, all they had to have done was to do a scan and they would have seen my kidney was being shut off. Unfortunately it didn't get properly noticed for 10 years or so by which time too much damage had been done. Sadly, we all have a responsibility to shout and get ourselves heard and it's an utter disgrace doctors still come out wth such insensitive silly comments. Inexcusable isn't it when we are suffering so much.

Let me know how your consultation goes. All the very best x x

Telli686
Telli686
in reply to Sez73

Thank you so much and I apologise for my late reply! I do think it sounds like yours and could definitely be related to my bladder and kidneys, I hope the doctors listen to me this time!! I have lost count the endless appointments saying exactly the same things over and over, each time feeling more and more angry and yet deflated! I can only hope for answers! All my love xxx

Sez73
Sez73
in reply to Telli686

Don’t give up, keep fighting to get answers. I became an expert in simply wearing down doctors until they now kind of just agree with what I want to happen, I tell them what tests I want and if they don’t agree, I sometimes even pay and have them done privately then march back to the GP with the results to show them I was right, same with IVF clinics, after years of struggling I don’t even give them an inch, not in my normal character at all but I just won’t stand for nonsense when it’s me who is suffering most. After countless years being let down myself I have every right to be an utter pain in the backside to anyone in the medical profession because it’s ultimately their fault they misdiagnosed me so many times & left me with huge consequences and sacrifices in life. You sound like you’ve been continually let down but stick to your guns and you will eventually get answers. All the very best x x

Telli686
Telli686
in reply to Sez73

Ps. The last time I went to my GP about this pulsing pain (which also coincidentally resulted in a kidney infection that ended with me in hospital and still nothing no further tests!) the doctor said "Don't worry, it's ok if there is a problem with your left ovary because you have 2!" I wish I'd spoken up then but all I could do was cry no matter how much I fought with myself not to. Something needs to change because the physical pain we all go through, I wouldn't wish on my worst enemy, but mentally, I think the doctors can make life far worse. Xxx

I know exactly what you mean about the pulse pain in the left ovary area during ovulation. I'm actually experiencing it right now. I imagine it's like the egg has been released and it's pushing past the endo nodules, which is causing the pain. But that's just my imagination of it. I had my lap 5 weeks ago. Endo was found around my right ovary and a little bit of endo around my left. So I wanted to let you know you're not alone with this symptom. I hope you get answers soon. Good luck. Take care xxx

Telli686
Telli686
in reply to Jess96

Thank you Jess96 this is what I originally imagined also, it makes sense, I think it may be a combination of both your replies I am seeing a doctor in 3 weeks I'm taking everything written down to tell them I don't want to forget any symptom I need them to listen to me! I wish you all the best xx

Jess96
Jess96
in reply to Telli686

Good idea about writing everything down. You don't want to miss anything that needs to be said. Let me know how it goes! Xx

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