Finally, diagnosis, Endo on both ovaries. - Endometriosis UK

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Finally, diagnosis, Endo on both ovaries.

Amb43 profile image
10 Replies

Had 1st Lap on Wednesday, was only told very briefly that I have Endo on both ovaries and to see consultant in 5 weeks. Any others with this condition? What is your pain like as I am not convinced. The main of my pain is in my constant lower back and not too much in the abdomen (but painful, erratic and sometimes heavy periods, and or spotting.) Was told there was nothing that would be causing my lower back pain. Am waiting on an Orthopeadic consultation, but my pain is identical to the period pain I have always suffered with in my back.

Also what might the options be for Endo on Ovaries.

Thank you xxx

10 Replies
Impatient profile image

Did they just diagnose you or did they do anything to remove the endo on the ovaries?

Did they mention adhesions from those ovarian lesions?

If they cleaned up the ovaries did they also check your fallopian tubes were still clear too?

Some questions there you might want to ask at the follow up appointment if you weren't told right away.

The great news is that there is endo and it does appear to be very local to the ovaries and not obviously attached to any other organs yet let alone invading them.

however that still leaves unanswered questions about the pain levels.

If they tackled the endo they found, it will be interesting to see if during your next period the back pains are less or still the same and how long the pain lasts.

it's early days yet, but at least you are getting somewhere.

Wishing you a speedy recovery.

Amb43 profile image
Amb43 in reply to Impatient

Thank you for replying Impatient, it was just a diagnositic lap and it was the anaesthetist who quickly came and told me briefly that they had found Endo on both Ovaries. I have to admit I feared from the amount of pain that I was riddled with Endo like so many poor ladies on here, so am very grateful it's such a small area.

As for the back pain, it has been constant, every day now for 5 months, I have had a couple of periods and it did get worse at those times. It's just a constant nagging, dragging, dull ache, like period pain and labour pain, and I was convinced it was Endo in Pouch of Douglas or Uterosacral Ligaments. Obviously relieved that wasn't the case, but it's hard when there aren't any answers yet for the back pain ( I have morphine for it), and also wondering what lies ahead with regards to the ovaries.

Thank you for your kind wishes, I will bare in mind your suggestions for questions needing to be asked when I see Cons. again. Hope you yourself are not too bad today. xx

jojo777 profile image

Hi, I hope you are recovering well from your lap.

Lower back pain is usually due to nerves being irritated/inflamed due to endo in the pelvis.

The nerves in the pelvis are so many and well connected that there is always a chance that due to inflammation because of endo, the nerves will react, thats why the back pain and the hip/leg pain.

I doubt it that the orthopeadic will find anything else than nerve irritation, but since you are on waiting list just go and see what he says.

I'm currently seeing an osteopath and he is very specialised in trapped nerves, etc and even in the first appointment by working in my neck area (didnt even go near the lower back or pelvis) he managed to ease the pain from my lower back. You might consider giving a try when you finish with doctors etc.

Jo x

Amb43 profile image
Amb43 in reply to jojo777

Thanks Jo Jo, didn't realise that inflammation from Endo could cause nerve related pain, I have wondered if it was to do with the nerves though because of the numb tingling sensation I get sometimes in one small area. My main symptom there though is a dull, dragging, nagging, ache, just like I have always had with my period, only this time, 5 months ago, it didn't go away.

I have also heard from a fellow sufferer on here that her Endo Specialist considered the oipinion of it being Orthopaedic "a joke". However, I have also just come across this:

Endometriosis is a common gynecological disorder that can cause musculoskeletal symptoms and manifest as nonspecific low back pain.

Case Description The patient was a 25-year-old woman who reported the sudden onset of severe left-sided lumbosacral, lower quadrant, buttock, and thigh pain. The physical therapist examination revealed findings suggestive of a pelvic visceral disorder during the diagnostic process. The physical therapist referred the patient for medical consultation, and she was later diagnosed by a gynecologist with endometriosis and a left ovarian cyst.

Source and further reading:

Thanks again, and will certainly look into seeing an Osteopath once I have had my post op appt, or seen my GP for results and full diagnosis. I was only quickly told I have Endo on both Ovaries.

Take good care, and I wish you a painless as possible weekend. xx

Cloudyrain profile image

I agree with Jojo about the endo on the nerves thing - it's what causes my leg and back pain. Another possible is if you hold your posture awkwardly to compensate for pain it can transfer pain. I know it might sound flippant but it's so true, I still get agony in my shoulders after I have a bad bout of endo, tho physiotherapy has really helped me manage it and reduce the pain levels.

Good luck with your follow up hon x

Amb43 profile image
Amb43 in reply to Cloudyrain

Hi Cloudyrain,

I have often wondered that too, it can't be good for other parts of the body when you are compensating for the pain. My back pain is my lower back and a dull, nagging, dragging, ache I have always had with my period only this time, 5 months ago, didn't go away afterwards.

Definitely want to look into Physio, Osteopathy or anything else that will help, but want to get to the route of the cause.. Have read of a couple of possibilities, but hopefully get an appointment soon to look into it.

Thank you for your well wishes, and in return, I wish you a painless weekend as possible. xxx

Sunflower846 profile image

Hey amb43 i hope ur feeling ok and recovering well. I hope u can get some answers as the not knowing is awful. I had my first lap in nov there and was found with severe endo with organs stuck together, I was on hormone treatment but stopped due to side effects and now on provera tabs to try help. But i can feel ur pain with the lower back pain. I am also suffering this everyday all day and now getting lower stomach pain and yes its like period pains. I would usually be due mine now but not got them yet and i have endo in my pouch of douglas which wasnt removed during my lap. I have took painkillers but dont have much relief but back to see my gynae on the 14th so will see what he says. Get well soon xxxx

Amb43 profile image
Amb43 in reply to Sunflower846

Hi Lynnie, how are you and how did you get on at your appointment on the 14th?

Hugs xx

Amb43 profile image

Hi Lynnie :) Am doing well thanks, first couple of days was extremely sore but seem to be healing well, it's my back that is still giving me dreadful pain, could hardly move this morning.

So sorry you have this awful pain too, to have that period type, nagging, dragging, aching, every day without the period (mine are intermittent) is just so dreadful, I sometimes shout out "GRRRRRRRRRRRRR!!!!" really loud lol, as well as crying :(

I have to say, I had, and still have, suspicions that my pain may be to do with the Pouch of Douglas area, from what I have read on other sites and from the ladies on here, it just fits. But, apparently, my endo is on both ovaries. I am awaiting an appointment to see an Orthopaedic so will have to see what he says then. I understand it can be a number of things, Endo related, Nerves, Musculoskeletal etc.

What painkillers are you using/able to use? I have gradually built up from Cocodomol and Buscopan, to Tramadol, and now Oramorph. I tried to resist having to take the morphine but ended up having to give in. It does help.

Good luck for the 14th, what are you hoping for from this Gynae visit?

Hugs xxx

Amb43 profile image

UPDATE: Well, it seems my suspicions were right, there is nothing wrong with my back to be giving me the pain!! Surprise, surprise, another fact I feel like shoving up the Registrars nose who told me I couldn't have Endo!! and my back pain was an issue for Orthopaedics!

Saw a lovely lady, a Clinical Specialist Nurse of the Pain Management Team at my local Hospital. She spent over an hour with me and I felt really listened to and my pain understood. She went through my Lumbar Spine X-ray thoroughly with me, very interesting, where everything was fine apart from very early signs of Scoliosis, nothing at all to worry about but an early sign to start taking care of my back for later on in life. She has told me to go back to Gynae with this info - it was them that sent me.

It does seem that I have an issue purely due to the fact that I have been immobile for so long, this will be fine with a little physio and maybe swimming but she said I am in no fit state at the moment to contemplate that. I need to get my main pain diagnosed and sorted.

She has given me Gabapentin (on top of my cocktail of meds including morphine) to slowly build up the dose over 3 days then, after 5 days of full dose, give her a ring and tell her how many times I still needed morphine and my pain levels each day. She can then see if it is working and adjust dose accordingly.

Sooooo, more waiting. Have my post op appt. on the 18th and seems there will be much to talk about and discuss. Have been told that I will not see a Registrar but Mr. Warren himself (!) who I wrote to after my distressing first appointment.

Wishing you lovely ladies a warm, comfortable and pain free as possible weekend. xxx

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