After one ovary removed help urgently needed please

[ElmoFluff]

hello ladies.

I've not had endo diagnosed but ik reasonable sure that I have it.

Little history

Right ovarian cyst removed aug 2018 it cam back by the October

Right ovarian cyst removed 2019 it came back by November

7th july 2020 right ovary removed. Tube left

No signs of endo each time and I'm assuming not this time as yet to have follow up.

Seemed to be recovering okay had couple issues with a wound and had antibiotics the last three days however I have been in agony all in right hand side like it was before I had ovary removed. The report from it implies all was okay with the removal. Was due a follow up 24 August but now its a phone call on 14 sept.

I'm waiting to start a new job so fortunately work pressure isn't there for me as their occ health won't budge till get what they need.

Back in Dec last year I had to go a and e with pain which ended up both sides and was actually a haemorrhagic cyst on left ovary as well as 4cm cyst on right.

I dont really know what to do im taking all my pain meds. My stomach is swollen like it used to before surgery. Surely 6 weeks after I cant have something wrong and I mean what could it be.

I'm so at the end of my tether with all of this. I have deep back pain literally stabbing and ache where the ovary was and all tightness and swollen

Has anyone had the same. I really thought this surgery would help as no one has said yes its endo and I have had the issue causing ovary removed.

Please any advise.

Xx

[ElmoFluff]

awful grammar and spelling sorry. Pain and meds im sure you ladies know how it is x

[kelsbels88]

Hi I’m sorry your in so much pain although this may not be too helpful I would say keep pushing the drs. You know your body best if something doesn’t feel right then keep pushing to get it checked/investigated. I got told so many different things when they were trying to diagnose me, ibs, crohns In the end severe endo all over my pelvis and bowel. The dr isn’t living with your pain so they shouldnt get to tell you how you feel when you are living with it.

Do you mind if I ask what consultant you saw? Were they a gynae?

I hope you get answers soon

Kelly xx

[ElmoFluff in reply to kelsbels88]

Hi

I was under a Mr Macdonald under lewisham and Greenwich Trust. He is gynea though only performed one of the ops

Feel like I've been left to it, I realise obviously that covid affects everything but to change my appt to a telephone call just feels wrong.

Part of me wants another scan done but then i can't see there being something in the gap ovary was. I even wondered if I was actually just losing the plot and actually the pain wasn't real but I know its real the bloating too.

Feel like I dont know what to ask for. I've had bloods done recently and it checked the inflamation Markers etc all were somewhat raised but told me all ok. Even though print out shows I'm folate deficient (which I have been before)

Ugh sorry I'm such a windge bag. Just feeling so frustrated. Have an odd pain just inside too which i dont even know how to explain xx

[kelsbels88 in reply to ElmoFluff]

Firstly,You are not a wingebag, so you can stop that now 😉

You are in pain and that makes us feel shit. Especially when it hits unexpectedly. I will say I think I read somewhere that your body needs time to adjust to the fact that the ovary is gone but it will.

I will say this gynae last May be aware of what endo is but they have no idea show to deal with it. My first lap I had a gynae deal with it (I had blocked tubes and endo in several places) he cleared one tube but wouldn’t touch the other (thank god -knowing what I know now) he then said he ablased some of the endo he found mistake right there. Ablation can cause more pain due to the scar tissue the laser leaves behind - think of it like an iceberg - the laser takes the top of but still leaves behind majority of the berg below the surface.

I went to another gynae because I moved counties and he gave me two choices surgery or ivf (we found the endo because we were trying to get pregnant) I hadn’t got pregnant in 18months so chose surgery I didn’t see how a body could carry a baby when it was so badly damaged inside so am going to get it fixed first.

Sadly endo doesn’t show on an ultrasound or in bloods. You would need either an mri or ct scan. I had both from my ct scan was a colonoscopy because I have endo on my bowel so they had to see how much. I would get a referral to a bgse endo specialist they no what they are doing how best to treat it and where to go next.

Just remember don’t let a dr (especially a male dr) tell you how to feel they are not living with your pain and can’t tell you how you are feeling they have no idea whatsoever. Your not crazy. I thought I had so many things cysts, pics, ibs crohns I eventually diagnosed myself and just pushed to be proved right after doing my research I knew I was right I just needed proof keep pushing honey xx

[ElmoFluff in reply to kelsbels88]

Hi

Sounds like you have been through an awful lot hun.

I had an mri a couple years ago that showed nothing but I just can't shake the feeling its there.

I dont really know what to do as if I call docs they arent going to help are they and if I call gynea I think they'll just be impossible to get hold of too.

I use phone consult or e consult with my gp for things like fit note etc or a repeat of meds but knowing what the are like they will just say if pain unbearable go to a and e. Which hated doing last time.

I'm awake and no where near time I can take more meds I'm so disappointed about having this pan again that they are going to tell me isn't possible as in don't have the ovary.

Worried that my new job will decide I'm not worth the wait too.

Xx

[kelsbels88 in reply to ElmoFluff]

I’m am so sorry your feeling like this. Can you try registering at a different drs? A drs job is to help you have a problem they should help and if they don’t then they aren’t doing their job properly. Periods shouldn’t be painful and just because they took out one ovary doesn’t mean that you don’t have it it could be somewhere else that they didn’t look. Please please keep pushing. Someone has to listen. If you feel really down about it contact endometriosis uk they have a helpline/support line and their website has so much info about the condition. I did a pain diary too over the course of a month and a cycle to have as evidence of when I got the pain and how bad it was on pain level 1-10 what I was taking to help the pain not that it really helped much.

Do your job know? If they do then they should wait? Just remember you didn’t ask for this. 💗 xx

[ElmoFluff in reply to kelsbels88]

I like my nurse practitioner at my gp surgery so im going to them today and ask for a consult with her.

I suffer with anxiety too so its just adding to it I think. Like I am sure I have endo but becuase I've had the 3 laps and supposedly nothing found then its like I'm making it up. But then my NP said that I lokely had adhesions and at one point a scan showed a fibroid. I tend to ask for all of my paper work copies because I've had all my notes lost at hospital once and that meant my first op was cancelled as had no information on an issue with my blood since a child

I was at a small company and this new job is with a police force doing admin. I had my start date all set but the got offered my op so left my old job as planned still.

Currently laid in bed on my front which seems to help and dreading moving .

I'm going to go back to doing a pain diary i think xx

[ElmoFluff in reply to ElmoFluff]

Speaking to nurse practitioner in morning about my pain. Hoping she has a suggestion x

[Yellowfellow]

Hi, I feel your pain! I had a massive ovarian dermoid cyst, which twisted round on itself six times and nearly ruptured by the time I was rushed in for emergency surgery. They removed it along with the ovary, saved the tube (not sure why?!) and now, 4 months on I’m still getting pains like the cyst is still there! Pressure, pulling and weird nervy pain down my leg (as well as lots of other symptoms I now know are endo related) Its four months since surgery and the last two months has been much worse. My GP said it could be nerve damage and behaving like a phantom limb... so maybe you have a phantom ovary like me! It’s not confirmed and I’m waiting for another scan (already had a follow up which was fine)

Had first endo consultant appointment a few days ago and he is suggesting laparoscopy or treat with hormones. I’m due to start an intense masters degree on the job type training next month and haven’t even told them yet... not sure how to play it. Also doing a lot of dietary changes, Mostly cutting dairy, wheat and soy, according to book by Carolyn Levett. I’ve only just started reading it so its early days for me yet, but two endo sufferers have told me has been lifechanging for them managing their symptoms, maybe worth a try.

Sending hugs! X

[ElmoFluff in reply to Yellowfellow]

I have no idea why I had tube left either it makes no sense. I dont know if I should contact my docs due to the pain or what.

Its so very disappointing isn't it when everything we have done that should help then ends up pain i feel like it's just how this is going to be for me now xx

[Yellowfellow]

PS the idea with this diet is to reduce oestrogen production in the body. I feel this will be most helpful to me because my worst time is around a week of ovulation, I get extremely bloated, hormones all over the place, my boobs hurt SO much I could cry just moving my arm, chronic fatigue, fibromyalgia, and the weird gravel crushing my lungs feeling between my chest and thoracic back that travels up my right shoulder, neck, face and down arm which I now know is referred pain from irritation in pelvic area to diaphragm (or could be endo on diaphragm itself) and have spent nearly a decade trying to explain to various doctors who pretty much rolled their eyes at me! I ended up quitting my job before I lost my mind completely and now I’m skint and back at my parent’s at 37... not ideal!

I’m only saying this to help you realise you are not alone, you’re not going mad. We know our own bodies, women are incredibly intuitive by nature too.

I’m not sure if you are open to it, but I have found relief with acupuncture, bowen therapy meditation every day. No it doesn’t take the pain away listening to a soothing voice but I have found some surprising relief in little ways and my reactions to my experience of the pain, learning to be kind to myself is helpful, its hard enough. Send me a pm if you’d like me to share them xx

[ElmoFluff in reply to Yellowfellow]

oh poor you. Thats just awful hun. To be fair I'm 35 going through divorce and waiting to start this new job that I am dreading they won't let me start ir ill end up sick again. My previous employer was awful and everything was made to feel like I was personally being horrible to them nothing about how my life was affected. And I'm living at my grandparents.

I'm not sure where I am exactly cycle wise. As I had a period then op which I need for equivalent to normal period for me after then around 26 days from that i had a period which was awful. But based on that I'm when ovulation would be now.

I will pm you a little later on today thanks so much.

Also, I'm open to anything that can help. I'm not familiar with bowen but I've had acupuncture before.

Xx

[ElmoFluff in reply to Yellowfellow]

I'm speaking to my nurse practitioner tomorrow morning hoping she can help me x