Endometriosis UK

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At a loss 😢

Hi there wondering if anyone out there has any advice. I had a bilateral salpingo oopherectomy 10 weeks ago. I was told after this op that everything should be good and I would be Endo free. My ovaries were “stuck” to the pelvis cavity. During the laparoscopy my surgeon took biopsies and also looked at uterus, kidneys, gall bladder and liver , thankfully there was no endometriosis present there. He said he would discuss findings with me at follow up. He was really caring and understanding. I recovered well from the operation and was relatively pain free apart from the healing but after the 3rd week I began to have pain again but just in my right side, back, hip and abdomen. The pain is exactly the same as before my op . It hurts and pulls when I need to urinate, during and after. Also when I feel the need to go I can’t hold it, and also when I need to open my bowels there is pain . I went to my gp who arranged an ultrasound which was all clear apart from fibroids which I knew about already. Could this still be endometriosis related even though I’ve had this operation. There was no mention of Endo being anywhere else but I’m also not sure to what extent my surgeon explored. He is currently unavailable for the foreseeable future , when I went for my follow up appointment it was another gynaecologist who wasn’t really willing( or able) to discuss the findings or answer my questions. He advised me that his job was to prescribe HRT and discharge me back to my gp. I have since spoken to my gp and have been referred back to gynaecologist. I do feel extremely lucky to have a proactive gp. The appointment is with the same consultant who discharged me. I feel that he will just dismiss me again.

Could this pain I’m now feeling be imaginary. Am I wasting everyone’s time by being referred back. I have suffered for years before this op from heavy blood loss and pain but always thought it was “normal” as we didn’t discuss periods. I feel so alone as scared I’m just over reacting now. Should I just pull up my big girl pants and get on with my life the best I can.

I promise I’m not feeling sorry for myself as I do continue to hold down a full time job and have an amazing family, and really appreciate the help I have had so far, but just feel as though I am no further forward than I was. If I just need a kick up the bottom please feel free to let me know 😊.

Any advice will be greatly received xx

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Sandygirl6697

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Hi, I hope you’re having a good day?

I’ve suffered years of pain, finally found an amazing gp who pretty much straight away got me referred to an endo specialist, having had several tests and scans then a laparoscopy I had a total hysterectomy, my ovaries were also stuck with endo but because of my age they left my ovaries and removed the endo. I thought that was it and I’d feel so much better. Unfortunately only after 4 months the pain came back just the same as before, sharp pain to mainly one side of my pelvic area. I was referred back to the specialist and I was told the endo had probably come back and I needed an oopherectomy, I had that a few years ago now, but again I had pelvic pain return after 6 months. I then had another laparoscopy 5 months ago. Only now I’m feeling pain again!

It’s so frustrating, like you, I feel is it’s in my head, but we know our bodies, I’ve also had great support from my gp, family, and consultant, I’ve not mentioned it to anyone til now either, but after reading your post I don’t feel like I’m the only one going through this. Im sorry this isn’t giving you much advice, but I hope it help you know you’re not alone. Maybe now we should consider going back to our doctors and have a talk about how we feel?

I hope you get some advice and help, keep in touch, let me know how things are going.

Big hug 🤗

Thank you so much big hug, just the name has bought tears to my eyes. I honestly think I’m going mad some days. In some ways the op helped but I am still left with a lot of the same issues which do seem to be getting worse. Just taking the time to respond to me means the world. I’m so worried the consultant will say no way it’s Endo or that it’s too soon. I was told without my ovaries there would be no more issues but after reading so many other posts I know that isn’t the case. But to be suffering again this soon just made me think it can’t be possible either. I know I need to give the consultant credit but he isn’t an Endo specialist. Not sure how to go about asking to see an Endo specialist or if I will be taken seriously if I don’t get any help.

I think we do suffer in silence a lot don’t we as don’t want to burden family friends etc when they have supported us some much and just want us to be “better”. It’s so good to have ladies like you to share with. It would appear we are not alone 😍. I will post sun update . Again thank you so much you can chat to me anytime xx

No! You’re not imagining it, and don’t let anyone else tell you so. Don’t grin and bear it. Don’t be dismissed.

Do make a note of every symptom you’re having - describe the pain, score 1-5 how painful, where it is, when you felt it, how long it lasted. Build up a picture with data. Start now, but also add the most memorable episodes in the past.

Do ask for your discharge notes and findings. The consultant has a duty of care to provide this. Does he know your medical history and past pain that led to your operation? Tell him if he doesn’t.

What do you want from this appointment? Answers? To stop the pain? Decide what it is and tell the consultant.

Best of luck - you are in charge, and you are the expert of your body, the consultant is there to support you. Xx

Thank you so much. I have started to keep a pain diary again but this time adding more about how it is truly affecting me . I do have notes from previous op but other than saying what had been done it didn’t really say much other then biopsies that were taken were all clear which is why I am thinking this now can’t be Endo related.

I think it’s answers I want about the true outlook or possibility of the Endo still being with me. Ideally I want the pain to stop but need to know firstly where I am at. As this consultant isn’t the one who performed op or was looking after me before him worried he will only look at what was found at the time.

Thank you again xx

Hi I had a BSO last Monday so still early days and in the healing process. We’re you told if you had adhesions? I had loads low down on my right side around my bowels which were cut and separated I also had this done 7 years ago, I was wondering if you also have adhesions and that’s what you can feel pulling and causing pain just a thought. I do hope you get some answers and can start living a more normal life soon x

Hi thank you for your reply. I really hope you are recovering ok, although very early days for you bless you. I’m sorry to hear you have had to go through another op.

There was no mention at all about bowels so I don’t know if this was looked at or whether it was but was clear. My consultant came to see me straight after op and said it took much longer than he thought it would as left ovary was adherent to ovarian fossa. He said he would give me a better update at follow up including images ( he really was so caring and so keen to help me) but unfortunately due to unforeseen circumstances he isn’t available for the foreseeable hence why I saw a different consultant at follow up. He wasn’t even going to tell me findings just wanted to prescribe HRT and discharge me. I had to ask and then he just said “your ovaries were stuck and there was endometriosis scarring” but you’ll be ok now. My pain too is now mostly on the right side and dies feel like a pulling stabbing crushing pain.

I hope you make a really good recovery and hopefully too can start to live a pain free normal life. That’s all we ask for isn’t it 😘

If ovaries were stuck then most likely that was by endo and it could be deep endo and unless the biopsies are at the exact right spot then they don’t always show endo. I had a total abdominal hysterectomy and bilateral salphingo oophorectomy and have had 3 more laps since as endo was left and it was deep infiltrating endo. Endo can produce its own oestrogen to keep growing so even with no ovaries it will grow. And you need to be on combined hrt to give best chance of not feeding endo.

Your gp needs to have referred you to a Gynae with at least a special interest in endo and you need to ask for another referral is the Gynae is appropriately qualified.

Thank you so much for this reply. I have learnt more from your reply than any consultant has told me. I hope you have found some relief now and are doing well ❤️.

Why are we not given more information and facts about Endo. That’s why this site is so good. I’m still not even sure that my consultant looked beyond the pelvic area. I just assumed that if biopsies were clear then Endo was gone but it makes sense that as you say, unless the Endo was at biopsy sight it wouldn’t necessarily be picked up. I’ve made an appointment with my gp which luckily is before my follow up so I will ask her to help me with my options. Should a gp listen to me if I request to see an Endo specialist? I’m so lost with where I should go and who will help.

I am on a combined HRT which I have only just started as it took so long for consultant to write to my gp to request this.

Can I ask, if you don’t mind, after your hysterectomy and BSO did you have menopause symptoms straight after. Even though I didn’t start HRT until this week I had not had any menopausal signs or symptoms at all but have been having a lot of period cramps.

I really do appreciate your reply and advice thank you again for taking the time to talk to me xx

I have had to learn the hard way about endo as mine wasn’t cleared out at hyster as done by a general Gynae and he left it behind saying it would die off. It doesn’t and as it was severe just kept growing! I had deep endo sewn into my vaginal vault so my pain got lots worse before I found my way to a bsge specialist centre. Lindle on this group helped me enormously so if you search her posts you’ll find out more.

Your gp can refer you. But without a severe diagnosis it’s to a Gynae with special interest in endo which means they’ve done extra training in endo.

I had hot flushes on leaving hospital despite starting on tibolone as I left! So I needed a different tablet. Gynae first gave me oestrogen only so I had that changed as soon as I found an endo specialist. I was on patches to start with but my body doesn’t absorb things that well so I switched to tablets.

Since my hyster I’ve had 3 more laps. The last two at a bsge centre for deep endo. And I’m better than I was but I still have daily pain - and all because a general Gynae tried to treat me rather than refer me onto specialist as nice guidance dictates.

Good luck.

I’m so sorry you are still suffering after going through so much. My original consultant performed an ablation on me about 5 years ago which is the main reason when the situation got so bad I realised it wasn’t just “bad periods” that the gp referred me back to him. He does have a special interest in menstrual disorders . He was very good to me and I do feel lucky to have had him on my side but I’m not sure now how much he would have looked beyond my lady parts. Now as I can’t see him again,the other consultant I saw (and will be seeing) is a general gynaecologist 😣. I am thinking now that perhaps I should try to explain to my gp how I feel about seeing him. Will anyone take me seriously after only 10 weeks since ovary removal though . I will look through the posts by Lindle, thank you for that.

Again I really do appreciate everything you have said to me so far.

Take care xx

So if you had ablation that’s a diagnosis of endo so tell your gp that under NICE guidelines you must be seen by a Gynae with special interest in endo. It isn’t the same as menstrual disorders so tell her that. And as new consultant is only here all gynae it really isn’t appropriate at all to see him. So I’d use that as your reason. If gp won’t listen or won’t refer you on tell them you want it noted in your medical records that they refused to follow nice guidelines. That usually makes them do it!!

I’m so glad I’ve had the chance to talk with you , I’ve learnt more from you than any doctors or consultant. I’ve tried to make an appointment with GP bit no appointments available with her, trouble is at the moment you never get to see the same person so no consistency but I’m going to keep trying to book with her. When I had the ablation I was only told it was to help with the heavy bleeding, endometriosis was never mentioned then 😞. My trouble is I never want to rock the boat and go with the flow, but now I’m going to have to find the strength to be firmer. I think as I always thought my periods were “normal” as these things were never discussed , and when I did say about them was always told it’s only a period, I just thought I had to get on with it. For over 20 years I have just tried to get in with it, as do so many of us suffering like this. It’s only been the last 6 months that Ive really realised I don’t have to just get in with it, that actually there is something wrong with my body.

Sorry to load this on you I think my talking out now it is such a relief that I’m not alone

I can’t thank you enough for your help and time. You’ve given me so much strength in the last couple of days xx

Has adenomyosis ever been mentioned? That’s when endo affects the actual muscle of the uterus and causes pain and heavy bleeding. You can have endo or adeno or both. was the ablation a womb ablation? That would be more for adeno and go stem heavy bleeding.

Unfortunately I learnt the hard way how we have to educate ourselves and then advocate for the right treatment for ourselves. Happy to help any time.

When I had the BSO the consultant said he looked at uterus and it was clear of Endo or Adeno . The ablation was on the womb yes and was to help with the heavy bleeding, which it did. It’s as though it’s a big secret when they do procedures on us and they only tell us snippets. I hate to think that you have had to learn through the hard way to be able to share your advice . Even though I’ve been suffering for years I am only just starting my journey of diagnosis (or lack of true extent possibly)

Hi,

It sounds to me like it could be either the surgery wounds still settling down or it could be adhesions. Adhesions are a tricky one to treat as having further surgery to release them can cause more adhesions - may I ask why you had bilateral salpingo-oophorectomy but no hysterectomy give you suffer heavy bleeding and have fibroids - if you do have surgery to release and re-look you’d be as well to have the hysterectomy, in my opinion.

If you’re on HRT can aggravate I needed to take it slow following my surgery because it seemed to aggravate the pain where endo was removed initially.

I hope you get sorted, if you’re keeping your uterus I’d ask for mirena as this can help bleeding and pain.

Good luck x

Hi MinnieThank you for your reply. I did initially thing the pain was from healing, as did Gp she was also concerned about infection so sent me for Ultrasound, luckily this was ok. But the pain hasn’t settled down at all if anything it’s getting worse and same as before but mostly right sided now.

The consultant advised that having a hysterectomy wouldn’t be necessary as I had responded to Zoladex injections ( although did still have pain during these) and that having a BSO would give me a really good result. To be honest I was more than prepared to have a hysterectomy but I was convinced that he was expert so I would be safe going with what he thought best. Since then several doctors (not even gynaecologists) seem surprised I do still have uterus.

I am concerned about side effects of HRT and feel uneasy taking it , I’m on Elleste duet 2mg.

Thank you again for your advice and guidance.

Take care xx

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